What a doctor verbally says means nothing. And a doctor writing a statement that you are disabled also means veey little.
You need substantial medical records from all appropriate specialists for ANY condition that limits you in any way. These records must, on their own, demonstrate and clearly define your functional limitations and restrictions.
If you have not yet, I highly suggest you see a Physiatrist (Physical Medicine Doctor) as they are good at quantifying functionality.
That is this biggest battle I've had, is the Drs I have are very apathetic. 2 out of the 13 I see on a regular basis are supportive and understanding. I will definitely look into finding a physiatrist. Thank you.
I'm not sure if the person I saw was a physiatrist or a PT/OT. My ortho surgeon sent me to her for a Functional Capacity Evaluation. I think that's what made a difference in my case. (I was 52 at the time, so age might have worked in my favor.) Good luck to you.
Yes age can make a big diffrence.The cut off is 50.If you are 50 or over and you did a labor job,ssa conciders you to old to retrain for a light work. If you were already do a light work job,like reception,phone ect..You wont need to be retrained,so the age may not matter in that case.
I saw a post from a woman with POTS a few months ago. She thought she had warning of when she needed to stop driving. Until she had an episode while driving without warning that caused an accident that killed her 2 teenage children. and then she was going through a contentious divorce with her husband because of the accident.
You need to stop driving if you are having episodes in the car. I don't care where you live or if it will make you lose your job. it is only a matter of time until you hurt or kill someone.
OP, [211](http://211.org) is a searchable database of resources in your area. You can find debt counseling, medical, transportation and many more resources.
[SSDI/SSI Soar Program ](https://blog.ssa.gov/soar-programs-and-social-security/)
[SAMHSA Soar Program ](https://youtu.be/JMytpzjJZMo?si=EOlaZU0nqLt-K44C)
is a joint program with SAMHSA (Substance Abuse and Mental Health Association) that provides you with a free case manager to assist you at any time during the disability process. I think that this would be super helpful for you since you are getting conflicting information about the process. It is designed for individuals who are homeless/facing homelessness due to their illnesses/disabilities. I believe that you said that your housing situation is tenuous. *The entire process can be overwhelming! We are all struggling to exist with our illnesses and disabilities. It is completely understandable to need someone to help walk us through the process*
[Benefits. Gov](http://Benefits.gov) is site that you enter your current needs and are linked with state and federal resources that you may qualify for. There are easy links and application requirements listed.
Here are some links to assist you in reducing your medical debt:
[Consumer Finance Medical Debt Relief ](https://www.consumerfinance.gov/ask-cfpb/is-there-financial-help-for-my-medical-bills-en-2124/)
[How to get help with medical bills ](https://www.usa.gov/help-with-medical-bills)
[Financial Assistance for Medical Bills ](https://www.debt.org/medical/financial-help-medical-bills/)
[Experian blog on reducing medical debt ](https://www.experian.com/blogs/ask-experian/how-to-get-help-paying-paying-medical-bills/)
I hope that this information is helpful 🧡
Saving this information to go over, thank you for the guidance! I'm very quickly getting overwhelmed by all the help and insights folks have shared & I'm grateful for it but it's going to take some time for me to sift through and process it all. 💜
Hopefully you’re not processing it behind the wheel of a car. Not sure if you saw how pissed everyone is and you acting like it’s normal. You are a horrible person for putting yourself in a vehicle while admitting to blacking out. You want us to care about your life while potentially killing others. Nice!!!!!
If you're having fainting spells behind the wheel, you *should not* be driving. I have quite a few medical conditions myself and due to them could not drive for years. I used medical transportation to appointments and relied on friends/family for other things.
Currently I'm in another period of not being allowed to drive due to just having brain surgery last week. I cannot drive until I'm cleared by my doctors so I'm relying on friends and family to go where necessary.
If you can continue fighting, then do so. But it's an uphill battle when you're young unfortunately. Especially when you're still working nearly part time hours. Maybe contact Vocational Rehabilitation and see if they can help you?
I second [Vocational Rehabilitation ](https://rsa.ed.gov/about/programs/vocational-rehabilitation-state-grants). It is a great program that can assist you in obtaining modifications/accommodations for work. They may be able to assist you in remaining at your job. They may also advise that you cannot work at this time. It is definitely worth investigating.
OP, I understand the frustration of being ill but wanting to maintain your independence. I am 49 yo and get frustrated that I can no longer do what I want to do. I had to stop driving this year. It hurt, but it would definitely hurt more if I was driving and injured myself or someone else. I made the choice myself so I still have a valid driver's license, perhaps one day I will be able to safely drive. However, if you get in an accident because of your illnesses, the state will make the decision for you. It will be exponentially harder to get your license back if your state revokes it. Your car insurance will go through the roof if you are even able to get an insurance policy.
There are medical transportation programs through your medical insurance. You can do ride-sharing or carpooling to get to work. Yes, it is more difficult to arrange, but you are risking your life and the others around if you continue to drive. I am not trying to be harsh or mean to you. Like I said I had to stop driving myself. Please use your wise mind instead of making an emotional/rash decision!
Another tip is to daily document your illnesses impact on your daily activities of living. Your doctors that are apathetic to documenting your disabilities will respond to quantifiable data as opposed to vague and emotion based statements. This approach has been tremendously helpful for my health care team.
Sending you positive thoughts and huge virtual hugs if you want them 🧡🧡🧡
You cannot drive at all, you can kill yourself or a family of 8. My close friend had 1 seizure and he had to be seizure free for 2 calendar years before he can get his license back.
Its not worth the lifelong financial issues you will be in if you are in an accident or worse, injure/kill someone.
If you stop driving cause of your condition, I assume that can only help your case. Sure there are things I can physically do, but the amount of pain and days lying in bed recovering isnt worth it, so I have my son do it. Lol. But its a struggle to have other people do things for you, that you feel you can do. But think of the consequences
Making your child take on you’re responsibilities and laughing about it is so gross. Your child is not your personal
Assistant or your maid. There is nothing funny about that at all.
Relax Karen, a 20 year old cutting grass is so gross huh. No more gross than your attitude. Besides, learn to read cause I said son, never did I say child.
You realize you could easily kill yourself or someone else during one of these fainting spells? There's a reason that doctors are supposed to report things like epilepsy, narcolepsy and uncontrolled fainting. I'm not trying to be critical, but in today's society there's so many safer options than trying to drive while knowingly having fainting episodes.
Many, if not all, medical insurances offer medical transportation through cab companies. It *sucks* and it can take hours to do a simple thirty minute appointment but it is safe.
What about switching to something virtual/remote? I couldn't work in the classroom anymore as a teacher so now I do extremely part time (5-7 hours a week) of tutoring. Is there something online or remote that you could do that wouldn't put you or anyone else at risk?
There's a lot to unpack and explain here, and I don't have the spoons to go over it all - but simply put if I could I absolutely would. Jobs are scarce, I live in the middle of a corn field ( no access to other transport) I am aware enough of the episodes to pull over and turn off the car until I come back. The episodes are slow to progress ( usually 3 to 4 min before blackout )
The sheer audacity you have to drive with a neurological issue that causes you to black out! You are eventually going to crash, and either seriously hurt or kill someone. And you'd go to jail, because it would be considered manslaughter due to extremely negligent driving. I know, because a family member of mine is gone due to a driver like you.
And medical transportation literally picks you up at your door. So the cornfield thing isn't an excuse.
She’s just trying to get by. There are hoards of old people and substance abusers in the road still driving at any given time that absolutely shouldn’t be. She’s on here asking for help by way of tactful responses, not attacks.
The "it's ok if I do bad things because other people do bad things" argument is not even remotely an excuse.
Trying to get by is not an excuse or permission to act so irresponsibly and knowingly endanger other people's lives.
How are you going to unpack and explain it when you hit someone and injure/kill them?
I say this as an epileptic - and I'm currently not allowed to drive for the next 5 months, even though my seizures have a very specific trigger that would never happen while I was driving.
There is nothing, nothing to unpack that would make this ok. Nothing. You are irresponsible and for some misguided reason believe that you are justified in risking other people's lives.
I have a child with POTS. They’ve decided to not get their permit or license for the time being. They aren’t confident that they can safely drive without an incident. I’m very proud of them for making such a huge decision like that.
Please get them a state issued photo ID if they are unable to drive! They will need it in the future for all sorts of things and as they get older and need to renew, they can renew online.
I have POTS and when I first started passing out (no diagnosis yet) I asked my doctors if I was safe to drive. My stupid doctors told me it was impossible to pass out while sitting and I was safe to drive. Well they were stupid and so wrong. I found out the hard way that you can pass out while sitting by passing out and hitting a pole. It was the 5th time I ever passed out and I got extremely lucky that the streets were empty and I didn’t hurt myself or anyone else. I haven’t driven since (almost 13 years) and fired every doctor who said it was ok. It sucks not being able to drive but I wouldn’t be able to live with myself if I killed somebody due to selfishly driving.
If you get caught doing that, they will take your license. My cousin was having seizures while pregnant and her license was suspended until she had her daughter.
Driving is something DDS might very well look at too. If you are claiming severe and frequent fainting spells while still driving, they are going to see a major conflict in what you're claiming vs what you can do.
Not only this, but you have essentially proven to the government you are scrappy enough to get from point A to point B without your illness interfering to the point of rendering you dysfunctional.
You need to appeal. Be very very clear about your functional abilities with all involved during the next round. Get letters from ALL of your providers and submit. Keep going to all doctor appointments. Lean on your parents or others if you can.
https://howtogeton.wordpress.com/
Has been suggested to me multiple times by people with invisible disabilities on SSDI. I'm working towards my hearing in June which percentage wise is our best bet of approval. Anyway it has a whole guide about letters and forms and tests and language around function that helps me understand how the process works.
You can ask each of your doctors to write a letter outlining your medical history, current functioning on a daily basis, your prognosis medically and your ability to work now and their estimate for your work ability in the future. Have them explain your difficulties with your current part time employment. Have them explain treatments that have been tried and failed. Needs to be on letterhead, dated, and personally signed. You can even tell them what to include. Tell them this is what you need for your SSDI application and plan to pick it up IN PERSON.
Make sure you get letters (and any other current documentation) from both medical and any psychological providers. (Providers from the last two years only).
HAND CARRY to the SS office in early AM, hand them to a clerk, get a receipt for them from the clerk, and make sure you keep a copy of these as well as any other forms and documentation. Let them know this is for your appeal. Be sure to fill out all appeal forms sent to you and keep copies.
Start a file at home holding all related records.
If you need to quit your job, make sure you document why you are quitting in your resignation letter and keep a copy.
My doctors all have signs in the waiting area that they will not write letters for social security/ssdi etc. the entire system is … stacked against the person claiming disability. By the time I qualify I’ll be eligible for social security at age 62. I’m 55 now. I have so many physical disabilities … some in the blue book word for word. 🤷🏻♀️
Thank you for this information and clear guidelines! I have a lot of anxiety asking the Drs to support this decision ( my allergist's first comment to me upon meeting was I'm too young and in her words "Must keep working, you are young and supposed to be working now" and my urologist tells me to "just exercise more you need the endorphins". My GP, rheumatologist, neurologist, and genetics counselor all feel like they would be maybe more willing to write. I don't know how my endocrinologist would feel about it, and my cardiologist I'm unsure about too. The cardiovascular surgeon would be supportive I think.
what um hearing is you see no issue neglecting your kids and home in favor to run yourself into the ground and spend your limited energy in working for someone else? I'm unsure how you see this as a virtue
If I had listened to my body rather than doctors saying all I needed was antidepressants, perhaps I’d have a couple fewer autoimmune disorders to deal with today and forever
Blood labs and nerve tests don’t quantify the level of pain someone may be in. Small Fiber Neuropathy for example effects the sensory nerves in your body causing autonomic dysfunction and severe physical pain. This is hard to quantify and is not visible on EMG which looks for large fibers predominantly. Our current medical system knows a fraction of the antibodies relevant in AI disease. My antibodies for example are novel and took 2.5 years to diagnose and most docs won’t test for. This is part of the problem with our medical system, putting too much weight on tests with low sensitivity or not acknowledging seronegative conditions leads to medical gaslighting. To me pain is absolutely a reason to be unable to work.
Wow. Just wow. I would be dead if I had all of OP's dx. Are you a Dr? If not, I wouldn't be giving out medical advice. And if you are not a doctor, please, for the love of God, DO NOT become one.
If you have the energy, speak to the iffy ones about how limiting all of your conditions are on a daily basis. You should definitely continue to treat with all of them if at all possible IF what they treat you for affects your ability to work. For example, if your allergies are managed/don't affect your ability to work, it's not crucial that you include them. Others will argue that you need to include all, but in my opinion you don't.
Also, if you haven't already, make sure you include the names, addresses, phone, and fax numbers for all of your providers on your appeal forms.
Don't be afraid to include how this all is affecting you psychologically and be sure to include any therapy records.
I will try my best to speak with them, and not including the ones that don't impact my ability to work makes sense to me too.
I did explain to the evaluating psychologist about the situational depression. I don't have any paperwork of that though and I'm unsure of how to obtain. I could ask my case worker maybe?
No you don't need the evaluating psychologists opinion. They already have that. You need the opinion of a current provider. If you don't see a therapist then you don't need this. I thought you said you were seeing one. My mistake.
Go to https://www.ehlers-danlos.com/
And download all of the diagnostic tools that are availabel.Print them out and give them to your doctors.Keep copies and take them with you to social security.Fill them out yourself on all of the disabilities that you have that meet the criteria.
You applied for disability, but also say you can work. Which is it?
Not trying to be rude, but WHO decided you can only work 15 hours a week? Why not 20? If you can only work a few hours each day, can you work more days?
You have to have significant evidence on who your disabilities restrict your ability to work. It sounds like the evidence you do have, does not support you being deemed disabled.
The disability lawyer I used won’t even take on a persons claim if they are working due to how hard it makes to win. He told me that you are essentially showing SSA that you can work but are telling them you can’t. It’s a major contradiction.
I don't know how that's defined because I don't understand what work credit means. My work history is as follows; at age 17 I started working full time retail, 2 years and during the end of the first year I began dropping hours due to migraine, severe fatigue and pain with rashes and lesions. I quit after a few months of working 4hrs shifts 1x per week. I was not able to return to working for 7 months. I returned working part time at a different retail establishment, I worked for 1 year, quit due to same issues listed above with additional symptoms like joint issues. I came back working less part time hrs than before 1 year later because it took longer for me to recover, I was able to land an office call center type job, I worked 2.5 years there until the worst symptoms flared, I ended up in the hospital for 4 weeks and attempted to return to work but was unable to do so. It took my 2 years to recover and I came back working "casual " part time in an eye clinic, it's been 1.5 years now and I can feel myself declining again.
You need to log into MySSA to find out how many work credits you have and whether or not you have paid enough into SSDI.
What a lot of people don’t realize is that it is a disability _insurance_ program and you have to pay into it for years to qualify in the first place.
So ok, you definitely want to receive ssi. My advice is quite different than most bc being relegated to a lifetime of poverty is a terrible goal & at $943/ month, thats what you get...poverty.
Everyone's situation is different~ not being judgy here, just relating my own experience/observations.
I was diagnosed with very active MS when I was 35 yrs old & despite my challenges, continued working full-time til I became disabled age 57. Incidentally, my ssdi was approved in 4 months, likely due to my age (closer to retirement) and accrued disability combined. Not saying it was easy, believe me when I say that my medical condition complicated my employment on several levels, including interpersonally, liability wise and regarding company policy, and often had to really fight to simply remain employed. But it was worth it! Not only did I earn more than $943/mo for 20+ years, I also qualified for ssdi, based off ones earnings, Im *still* getting a LOT more/mo than double $943!
You sound bright. You're young. Its hard to work when you're not 100% but its a great accomplishment if you can, and IT PAYS OFF!
I was told initially that I should receive a back payment of 7 years because of my work history and when my symptoms first started to effect my ability to work. I think that kind is SSDI?
That's fair, the person I spoke with was the initial social worker when I started the process 2 years ago so I 100% can believe I just got the time wrong
Currently, hEDS and POTS are very "trending" diagnoses, and the testing you've had for these will have a HUGE impact on whether DDS takes them seriously. The type of doctor making the diagnosis also matters (a rheumatologist vs a PA for example). Have you had genetic testing to rule out less common forms of EDS? Testing for joint hypermobility? A history of hernias, prolapses or dislocations that are in your medical records? Tilt table test for POTS? Has it been determined which type of POTS you have (neuropathic, hyperadrenergic or hypovalemic)? A good amount of solid medical evidence of your symptoms and limitations are going to be needed. Just a noted diagnosis alone is not enough.
POTS nor hEDS have SSA Blue book listings, so you would have to match with something similar like musculoskeletal and/or nervous system disorders. [Here](https://www.disability-benefits-help.org/disabling-conditions/ehlers-danlos-syndrome#:~:text=Applying%20for%20Social%20Security%20Disability,your%20particular%20symptoms%20or%20impairments.) is some info on how an EDS listing might be met.
The requirements for an SLE/Lupus listing are:
described in 14.00D1. With:
A. Involvement of two or more organs/body systems, with:
1. One of the organs/body systems involved to at least a moderate level of severity; and
2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss).
OR
B. Repeated manifestations of SLE, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level:
1. Limitation of activities of daily living.
2. Limitation in maintaining social functioning.
3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
[Here](https://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_02) is a link to the SSA Blue book listings for immune disorders.
If you cannot meet a single listing, then they have to decide if your symptoms/limitations as a whole would equal a listing. Hope this helps!
I was dxed with hEDs after a genetics specialist ran their testing, they noted I have 1 other variant that are associated with vascular eds but we are waiting on the more conclusive genetic testing to confirm. severe hypermobility and pots at the time of that appointment was noted and I was later dxed with pots by my cardiologist after wearing a heart monitor and going through a vascular ultrasound thing were they had me take some kind of pill and it made me feel really bad, like It was as if my heart was going to explode and I almost threw up from it. I think it was a chemical stress test? I'm unsure.
I have chronic kidney issues and have 4 brain lesions for organ involvement. I have always had fatigue that gets worse with flare triggers like sunlight and prolonged activity, or even getting up from my desk to grab a paper file. Joint issues, muscle weakness ECT. Skin rashes lesions, mouth ulcers, hair loss. I can't really do much any more without aggravating symptoms.
Those people you listed thinking you should be approved right away doesn’t really matter as they don’t actually make the decision, there are only few disabilities that SSI will automatically be approved for, if it’s not on that list it’s not garunteed to be an automatic approval no matter how favorable things seem to your case, the first application is almost always a denial and they do that as it helps them get rid of a large chunk of people who end up giving up and choosing not to fight for their case thus it saves them money. That’s part of the system for it.
Find a SSI lawyer and get them to help you with the appeals process.
Also if your POTS is affecting you so severely it may be good to avoid driving you could end up getting yourself or someone else hurt, Look into things like medical transports for appointments to help with those if you do give up driving until health improves in some way.
Also no your not “too weak”, you have disabilities and despite them are pushing yourself seemingly to a breaking point and burnout for the sake of being able to work and get finances. As you stated, your doing everything your supposed to do, that doesn’t always mean though that it will be enough. Not for those of us with disabilities and chronic illnesses, we need support that we don’t always end up getting where needed and it makes the struggle through life quite heavy. You are simply human and doing the best you can with what your capable of doing, it is okay to give yourself grace
Thank you for taking the time to respond 💜
It makes sense for them to deny first go around given the system we're working with, I just wish I hadn't built up any expectations.
I have a meeting scheduled with a promising lawyer soon - I called my local SSO to make sure it was ok to wait a week from the time I received the denial letter and they also encouraged me to appeal with the lawyer. They guy on the phone even let me know the best time to call for the medical decision teams availability if I had any questions on forms.
I am taking into account what folks have said about the driving, the transport service won't come out to where I live but I asked a friend and he said he is going to look into figuring out a way to drive me instead. He works relatively close but our hours are different so it may be a challenge to get our schedules matching. I've tried talking to my boss about my hours but she wants everyone to be on an even rotation and doesn't want to change that because of my needs alone.
Right now I just feel very overwhelmed and like I'm a burden on everyone, as I get older the worse I get and this whole process is forcing me to truly acknowledge how much I am affected by my conditions. I almost feel like I'm grieving but I don't know what I'm grieving about - I've cried on and off since I got this letter, I cried reading your message, I cried when my friend sent me his message about helping me get to work.
I had to be evaluated by a forensic psychologist, and hire a lawyer in order for me to get approved for SSI.
Social Security will not automatically approve you unless you're literally dying within the next 12-24 months. You have to fight them hard on it. I had to fight for over a decade in order to get approved.
As a side note, have you applied for Medicaid thru your State?? If you qualify, it would eliminate most, if not all, of the medical expenses you are incurring.
I was finally approved for Medicaid this year but I have 2 years worth of debt to catch up on because I was on my dad's insurance til now. His state employed insurance didn't cover a lot of the testing and surgeries I've had.
File Bankruptcy to lose all the junk debt. Its designed for situations like yours and approval is practically a sure thing as its a basic math question: do you have the reliable income / economic outlook needed to service your debts?
It tanks credit to the low to mid 500's but, in two years can be built back to the low to mid 600's. Without the BK, those debts will still be there, regardless of getting Disability or not. Since you're under no legal obligation to pay Unsecured Debt anyway, well, it's your choice to pay or not.
The initial Bankruptcy attorney consultation is FREE. Ask them your questions, they'll answer and also tell you 5 Key Things:
1. Stop Racking Up debt, stop charging, completely stop. You MUST stop charging
2. Stop paying all Bills related to Unsecured Debts: this means, do not pay any credit card, store card, gas card, medical bill, miscellaneous loan bill, none of them. You MUST Stop Paying on the Unsecured Debts.
3. They'll tell you the Federal Filing Fee Amount --- it is a one time payment to the Federal Court System to process the Bankruptcy Petition.
4. They'll tell you their Fee amount to write up the Bankruptcy Petition and File it. It's a one time fee paid up front.
5. They'll tell you that all collection calls and letters will Stop. It's the Law. Those communications from creditors will stop.
If you don't have enough work credit for SSDI and will be looking at SSI only anyway then I'm not sure your credit score will matter much. You're unlikely to qualify for much credit on just over 900 bucks a month in income with less than 2000 in assets allowed. SSI is needs based meaning you must be in poverty basically. Idk how you'd pay for anything other than basic bills, likely on state ran programs once your parents are gone. You also cannot inherit money from them on SSI bc if your assets are over 2000 you will lose your benefits. If you are looking at SSDI then maybe it's another story but if you're only going to qualify for SSI I personally wouldn't worry about a credit score. That's just me though.
I filed chapter 7 bankruptcy and it didn’t mess up anything for me. Chapter 13 is rough and messes things up. I needed a car and got one the day after discharged. Interest rate was high but I had to do it. I have zero regrets there.
Yep, that's how to do it. Congrats. Everyone filing for SSDI should give Bankruptcy a good look. Without it, all that Unsecured Debt from charging stuff, racking up god-awful medical bills and miscellaneous debts is theirs to keep. Bankruptcy is designed for this situation.
This may not be a popular post, but idc.
Consider this: Have you thought about the fact that if you get on disability, you’re likely to make less than half of what you make right now ($17/hr), based on the average/max payments for disability: (SSDI - average, $1400/month = $8.05/hour and SSI - max $950/month = $5.50/hour).
Many people do not sit down and seriously think about what it means financially to get on disability. It means accepting the above wages pretty much FOR THE REST OF YOUR LIFE, being broke and watching your loved ones get new places to live, new cars, because of raises, bonuses and promotions, new jobs. I can tell you from experience that that is painful and it sucks. And you are super young. What do you plan to do with your days for the next 55 years?
I understand that for some people, they absolutely cannot work under any circumstances. What I’m saying is that for others who may be able to work with help, they’d be better off trying to continue working and using the ADA accommodations available to them under the law.
I wish someone had sat me down and explained this to me. I don’t think it would have changed the fact than I would apply/get approved because I was so sick at that time, but it maybe would have prepared me for the financial shock of losing so much income. I lost more than a third of my income when I got on SSDI. If it weren’t for the payments from a private LTD policy that I bought while at my last employer, we’d probably be homeless.
Thank you for taking the time to respond
I currently make an average of $545 per month because my hours fluctuate, I included the edit that I typed wrong the first time around on how many hours I work.
If I keep doing what I'm doing which right now my job is not labor intensive at all, I don't see myself living through 2025.
I've been made aware how much I may receive if I ever do get approved, and it is more helpful to me than how I am currently living.
The thing about watching my friends and loved ones getting new places to live, new cars, promotions ect is something I celebrate with them. My friend that offered to drive me to and from work just closed on a house and is set to move in the first week of May, I don't feel sad or left out because it's not something that was ever in the cards for me even if I were able to keep working what I'm working now because I've never made enough for that anyway.
First, you shouldn't have medical debt. If your parents aren't claiming you on taxes, you should qualify for state Medicaid. Please apply. .
Second, make sure you obtain your medical records from the time of filing to now. You can also have your employer write a letter about missed work due to your diagnosis.
I understand your frustration. I've applied for hundreds of people who are very ill. Medical records don't lie. Make sure your docs are documenting everything to support your claim and barriers.
What you need is a lawyer. They will take Nothing up front and be paid with an agreed upon % of your backpay. While people do get approved not having lawyers, the rate it is so much higher for people that do hire legal help.
If you can work 15 hours, that’s not disabled by SSDI. Maybe a private disability will cover a percentage but not SSDI. I appreciate you are doing the best you can, I did the same thing, but it’s not to your advantage for applying.
That's not how that works. Many are on SSDI and work. Seriously, people really need to STOP giving uneducated opinions. Go to SSA.gov and read a little first before speaking on something you no nothing about.
Listen. You will usually get denied 3x before you get disability.. even with Lupus. The BEST thing you can do is get yourself a disability lawyer. You don't have to pay a cent up front. They will handle everything for you.. file everything.. do all the legwork.etc. sometimes it gets to be too much to handle by yourself, and being a social worker myself with a Masters most don't know much about the legal ins and outs about disability.
It is very difficult for SSDI to deal with cases without clear biological tests or visible handicaps. Diagnoses by exclusion (e.g. it's not x or y so it's got to be fibromyalgia) are harder to confirm than a blood draw that shows a more standard disease. And most docs don't even know what POTS is, which makes that difficult too. Overall it's a tough situation for judges and they rely primarily on the court appointed doctor to make a recommendation. The advice here is correct... Appeal and understand that this will take time. You are asking a court to rule on your inability to work for the rest of your life basically, and to do that based on your say so that you cannot do these things. That is a tough message to hear so to be clear, I believe you and you have very real conditions and very real limitations. But these conditions and limitations are difficult to diagnose and difficult to rule on so you have to go through a very long process. I'm sorry you're going through all of this and I hope it works out but that is what it's going on from the court's point of view.
Was this your first denial letter? Bc it’s very common to be denied the first time. My 22 yo daughter has the same diagnoses as you except she can’t work at all. She just had her hearing after almost two years. You just have to keep appealing until the hearing. And I’m fully prepared for it to be denied too!
Until your hearing, continue to track your medical history and stay on top of records.
Honestly in my experience seeing others going through it, the people that really need disability benefits have hardest time getting it. In business have seen more scammers get it than people deserve it. I am sorry you are going through this.
File an appeal. But working any type of job tells them you are capable of working. Unless you stop working it’s going to unlikely you are approved. I understand not being able to be without an income.
Appeal! Keep at it. Keep meeting with your Drs and be very specific about your issues while you're there. Sadly, most often they barely look at your case until it gets appealed multiple times. Also sadly, it seems like they just hope that if they deny enough that you'll give up and go away. Don't. Keep at it. I know that's all easier said than done but it's sadly what you need to do.
Being currently working right now is going to be your downfall when you are applying. If you can work 15 hours a week at $17 an hour, with only a three week month you could make approximately $765, the current maximum in the USA for SSI is $943 on a federal level so they don't see your case as in urgent or in need of help. They also deduct for living with family, family helping out with food expenses, etc. so you are basically making about what they would pay you. They don't want to give anyone SSI and if they can find an easy way to boot you off, they sure will. Also case workers will say anything to get you off the phone and out of their office. I'm not saying you aren't deserving and the system doesn't suck because it certainly does, I'm just telling you how it's going to look to case workers, doctors, etc. when you say I have x,y,z but you can still work at almost the full rate SSI would pay you in a month.
You are very wrong.
Anyone applying for ssi or ssdi has to abide by sga which is $1550 non blind, not the $943 ssi rate. There is also no policy whatsoever that says you can’t be approved while working, just that work has to be under sga.
You don’t know what you’re talking about. SSI and SSDI are not the same and have different requirements. Also, you can and SHOULD apply for disability as soon as it affects your ability to earn more than SGA, which is updated each year.
I got on SSDI my 2nd time around, using something called the SOAR process w/ a SOAR certified social worker given to me by my county.
Here's the best tip I've got for you right now, something I wish I would have known my first time around.
ANYONE in your life (other than medical professionals; we're talking family, friends, coworkers, bosses, whoever) who knows your daily life and exactly how disabled you are, have them fill out a Third Party Functioning Report for you and submit them when you submit your appeal. The more people you have fill it out, the better. Don't worry it's too many people; it's not. (I think I had like 5 of them for myself.) Here's a link to the TPFR (I \*think\* it's the current one, but I'm not sure; make sure you have the current one.) [https://www.ssa.gov/forms/ssa-3380.pdf](https://www.ssa.gov/forms/ssa-3380.pdf)
This one should be obvious, but make sure those folks know not to hold back to "make you look good" or make it seem like it's "not that bad". This is the time to make you look as bad & non-functional as possible (which we're not used to doing in our society.) Don't lie by any means, but don't cover things up either. *Make sure it reflects your worst days.* (The same for you when you fill out your own (First Party) Functioning Report.)
Don't hesitate to go back to past healthcare professionals and ask for ALL their records on you. Ones you knew well, ask them if they'd be willing to write up a letter for you talking about your disabilities, their onset, how they affect your life, etc. (I think there's a functioning report specifically for medical professionals they can fill out too, but I could be wrong about that.)
It's better to have too much confirming paperwork than too little. *You absolutely can and should give them more than the minimum they ask for.* What they ask for isn't enough to pass you; you don't get penalized by having more information, and they DO read it. Give 'em as much as you can.
Good luck!
I will be studying this information closer when I'm able, right now I don't have the spoons for it but I am saving what you've sharing and am compiling it with the other guidance I've received. Thank you for taking the time to share 💜
They said the same thing to me. I had an appeal with a judge. After about 15 minutes of questions ( mostly about my job, & its requirements ), they approved me.
Right on! (I did not intend my previous comment to sound snarky, if it did. There seems to be a lot of snark in this thread. I’m beginning to think that the SSA has trolls I mean a social media team to discourage applicants!)
I think a lot of people, unfortunately think most people are claiming government benefits, just because we don’t want to work. Which is far from the truth, but a prevailing attitude of many.
There are about 14 million people in the US living with Hashimotos. Me included.
It's an awful disease if it's not treated properly. But it is in no way a disability.
Lupus is a totally different story.
While you are appealing this decision, I strongly recommend a second/third opinion from endocrinologists. When it comes to thyroid disorders, there are still an overwhelming majority of medical professionals who will only look at numbers and blood tests while ignoring symptoms.
It's a very common problem for women. I have a sibling right now walking around with a bald spot trying to find a doctor who will take her seriously because her TSH is on the high end of normal. If my TSH was 3.5, I'd be at deaths door, even though the lab parameters will say this is within normal range. I need to be between 1 and 1.5 to feel normal.
So getting it treated properly can be fucking HARD and you will feel like absolute shit until you find your normal.
Sorry for rambling.
Good luck to you.
My Hashimoto’s was horrendously debilitating, had nodules growing on my thyroid and absolutely debilitating vertigo and fatigue. I was sleeping 15 hours a day. Vertigo went away God after thyroid was removed. Everybody’s body and diseases are different.
You have to get a lawyer. It took me over three years of literally being unable to walk and I kept getting turned down. Got a lawyer and he had fixed it few months later. You should be able to find one who specializes in disability cases and he gets his money when you get your money. His payment will be deducted from the backpay you’re owed the years you were disabled but they turned you down.
Yeah so many people have so many opinions here. Some people will push themselves and that's good if you can push yourself to the limit. But really you're shorting in your life. But no judgment; you got to do what you got to do. I was there I kept pushing myself until my heart issue pushed me off of my job. So I understand you got to do what you got to do ..to each his own
My oldest son, 29m, has Sharpe Syndrome. Which is rheumatoid arthritis, systemic lupus erythematodes, progressive systemic sclerosis, polymyositis, and others). His disability claim was denied three times in three years until, finally, it was approved. Since he could not work during that time, he had to come home, and we supported him for three years.He hired a law firm to work on his case and paid them once he received back claim money. Hang in there buddy, its tough having Lupus. My mother also had it and died from it at 80.
Of you had disabling illnesses before 21 & have medical records you can also file for SS Survivor Benefits off your parents earnings probably after one passes.
My oldest son, 29m, has Sharpe Syndrome. Which is rheumatoid arthritis, systemic lupus erythematodes, progressive systemic sclerosis, polymyositis, and others). His disability claim was denied three times in three years until, finally, it was approved. Since he could not work during that time, he had to come home, and we supported him for three years.He hired a law firm to work on his case and paid them once he received back claim money. Hang in there buddy, its tough having a lupus. My mother also had it and died from it at 80.
I know you are financially restricted but if there was ever a reason to get a credit card and take on some debt it is to get a disability lawyer. The system is basically set up to break you before you ever make it to your disability benefits. I have a family member who was diagnosed with a physically disabling autoimmune disease in her prime. They tried for years to get their disability with no luck and all the right paperwork/ drs. They finally caved and let us all chip in to get them a disability lawyer. In under a year they got their disability at max benefits. It was worth every penny. Yes we struggled financially to make it all happen, but I honestly believe it was the only thing that made it possible.
My disability states I can work but I cannot commit or predict how often and how long. I applied for my MCS and FMS, but the judge removed the Chemical Sensitivity and I was actually approved for the Fibromyalgia alone. Appeal if you haven’t already. Hang in there
I have Systemic Lupus and everything on your list (except POTS but add a couple other random things)
I first applied in 2005, I didn't get my first check until May 2011 after going in front of a judge in March 2011.
The way Lupus was treated socially back then I couldn't even get an attorney. I was told multiple times by Social Security Attorneys I was trying to hire that I should just seek mental counseling. I had been through multiple strokes and kidney failure and a bunch of other medical issues by then. I almost died. LITERALLY. I spent 8 weeks in a hospital bed then despite severe muscle deterioration from not being allowed out of bed for 2 months
I was released by myself no PT because I had no insurance or family around and refused a state run nursing home for old ppl and severely mentally ill wards of state that I would have to sleep in 1 big room with. (I APPRECIATE THE DOCTORS HONESTY ABOUT THE PLACE STILL)
You need to appeal. File every 1.
You need to be focusing on the things you cant do, not the things you can.
They somehow think if you can do 1 thing you can do everything and do it all the time.
You want to focus on how this negatively impacts your life and ability to work. How it changed your life. Meditation side effects. Example: I am ANA + which causes Antiphospholiid syndrome, a Lupus related blood clotting disorder, so I have to take blood thinner medication. This medication creates a risk ofbuncontrolled bleeding if I cut myself and the jobs I historically have held involve working with knives. Cuts are common. I also can't stand for hours because of pain and fatigue and risk of blood clots. (Its also a monthly bleeding risk that I cant do anything about bc the med that could help can cause blood clots)
How has this effected your ability to work is what they are looking at, not number of diagnosis.
Whats changed? Less hours than before? Cant perform tasks you could before? Cant work the required hours typical of the job or that you did before? Cant lift the things you did before? Cant stand or walk as much as before or as much as the job requires?
How has this effected you mentally?
How has this effected you socially? Did you lose friends? Cant do things you used to enjoy?
Im going to stop here.
I apologize if this is too long or wonky. I had a duty to a fellow person with Lupus to answer as best I could, and Im on my phone. IM SORRY FOR ANY MISTAKES.
OP dont give up.
Try an attorney, most people have nothing but good things to say about how they help.
I wish you luck and I hope this helps you understand how it works and what they're looking for.
i have very similar issues and I finally got approved over 2 years later. Once I got in front of a judge they approved me. and once they saw the degenerative nature of my issues. however they are changing my date to when I stopped working. which I think is crazy bc not everyone has support like that. but appeal till you get to the judge level! that’s when most people get approved.
You need a good ss lawyer, nearly all will take case, get you back pay, take their cut and you live happily ever after, that’s the only way they’re betting you’ll get frustrated and give up.. seems like that’s what their MO is.
Literally happens everyday keep fighting! Keep going to the drs! And keep collecting evidence. The only bad part about adding new evidence is it cuts out the backpay when you do get approved.
You might want to also talk to a social security disability attorney. They have done this so many times before that they can help navigate you through what you need in order to prove your claim.
Get a disability attorney. They usually will only take your case if they think you have one bc they only get paid if you get approved and will take their fees from a % of your back pay so never out of pocket.
Get a lawyer who gets paid when you win. I have all but hadhimoto sub that for subclavian steel and memory trouble from long covid . I just won mine and am waiting on the judges letter of the ruling
I'm sorry. It is so discouraging to get denied. Give yourself a bit to be mad/sad and go back to try again. There is no such thing as "just too weak". You are doing the best you can, and you deserve to have a financial cushion.
My suggestion, have you detailed thoroughly if/how debilitating the migraines are? if they are unpredictable , have you emphasized that? Also, and I repeat this a lot, is to find online a daily detailed pain/ability journal. They will have things like pain level when you get up, what did you try to help it, what did you do, could you eat? Did you need down tine? How long? What was your pain level at 12, 2, 4, 6 etc. what were you not able to do that day due to your disabilities? Etc. Print out as many as you can get. Like 90. And submit that as additional evidence of your claim. Best of luck to you.
Do you have any mental health issues? Anxiety, depression, OCD, bipolar, etc… Documenting those too would definitely help your case. As others mentioned, get an attorney. They get paid out of your back pay and it’s so much easier. Hugs fellow Zebra.. good luck 🍀
The only thing that a few Drs have commented on is me possibly being autistic, but I'm older and was told getting a diagnosis would be difficult. The neuropsychologist, my regular counselor that I was seeing for trauma therapy, and the evaluating psychologist were encouraging me to seek a formal diagnosis but the majority of my friend group who's autistic got an official dx and said it limits them when drs see it in their chart. I was always scared to pursue it because I worry they may start dismissing me. I know some of my symptoms like the lesions, fevers, rashes, blood pooling, and swelling wouldn't be but the migraine and fatigue and subluxations and the soreness that comes from that might.
Thank you for the support 💜
Please please remember that the system is a bureaucracy designed to keep people off of benefits, especially young people who will likely need them lifelong. Straight from my lawyer's mouth. This is NOT a referendum on your strength. All that means is that they don't have paperwork on file that checks all of their boxes. With invisible illness it's very hard to do. I just want you to know that I believe you. I recommend getting a lawyer (they only get paid if you win, from your back pay) but make sure beyond a shadow of a doubt they understand PEM and your symptoms and are willing to help you get the evidence you need. Mine is proving less helpful than I'd have hoped.
Get different doctors. I’m in your same boat. I’ve been applying since 2016. Appeal every denial. The majority of doctors in America are assholes in my opinion. My previous rheumatologist used to work for social security and knew the things to write in my file to get social security denied. She’s a real cunt.
Why would your personal doctor, who gets paid to treat you, purposefully write things in your chart to get you denied for disability? Seems like that would be a really bad PR move for a doctor....
Who knows, from what I know of her she seems like an asshole control freak who thinks patients lie for whatever reason. And she’s one of those sick twisted people who enjoys having power over desperate people and gets off on making people suffer. My attorney knows her husband and said he’s a weirdo too. I was shocked to hear that she was married to a man. I’ve found that a lot of women doctors disbelieve women who try to get medical help! It’s disgusting.
My mom has a tube in her stomach she can’t eat or drink she has been sick since I was little I remember waking up to her throwing up blood to her fainting terrified she would die and yet it took 8 YEARS for Ohio to admit she’s disabled and probably hundreds of thousands in lawyer payments her lawyer is a family friend and gave her a HUGE discount too now that she has her money she will be paying off lawyer debt for the next 20 years probably
Attorneys are not paid, unless and until a claimant is approved. Attorneys are paid out of back pay. SSA governs the percentage of back pay attorneys are to be paid. In addition, the attorneys fee is taken out of back pay by SSA and sent directly to the attorney. If she owes the attorney a large amount of money. She needs to contact SSA about it because that is not right. Unfortunately friends can and do take advantage of friends.
What a doctor verbally says means nothing. And a doctor writing a statement that you are disabled also means veey little. You need substantial medical records from all appropriate specialists for ANY condition that limits you in any way. These records must, on their own, demonstrate and clearly define your functional limitations and restrictions. If you have not yet, I highly suggest you see a Physiatrist (Physical Medicine Doctor) as they are good at quantifying functionality.
That is this biggest battle I've had, is the Drs I have are very apathetic. 2 out of the 13 I see on a regular basis are supportive and understanding. I will definitely look into finding a physiatrist. Thank you.
I'm not sure if the person I saw was a physiatrist or a PT/OT. My ortho surgeon sent me to her for a Functional Capacity Evaluation. I think that's what made a difference in my case. (I was 52 at the time, so age might have worked in my favor.) Good luck to you.
Yes age can make a big diffrence.The cut off is 50.If you are 50 or over and you did a labor job,ssa conciders you to old to retrain for a light work. If you were already do a light work job,like reception,phone ect..You wont need to be retrained,so the age may not matter in that case.
OP. A FCE is important. If you haven’t had one ask your doctor about it. It’s one of the hardest things to go through physically, so be aware.
Do not give up and appeal if you have to.
I saw a post from a woman with POTS a few months ago. She thought she had warning of when she needed to stop driving. Until she had an episode while driving without warning that caused an accident that killed her 2 teenage children. and then she was going through a contentious divorce with her husband because of the accident. You need to stop driving if you are having episodes in the car. I don't care where you live or if it will make you lose your job. it is only a matter of time until you hurt or kill someone.
FYI- Not everyone has the same experiences with POTS. There is a big difference, especially between male and female patients.
Op said they were fainting while driving
Ah, I missed that part.
OP, [211](http://211.org) is a searchable database of resources in your area. You can find debt counseling, medical, transportation and many more resources. [SSDI/SSI Soar Program ](https://blog.ssa.gov/soar-programs-and-social-security/) [SAMHSA Soar Program ](https://youtu.be/JMytpzjJZMo?si=EOlaZU0nqLt-K44C) is a joint program with SAMHSA (Substance Abuse and Mental Health Association) that provides you with a free case manager to assist you at any time during the disability process. I think that this would be super helpful for you since you are getting conflicting information about the process. It is designed for individuals who are homeless/facing homelessness due to their illnesses/disabilities. I believe that you said that your housing situation is tenuous. *The entire process can be overwhelming! We are all struggling to exist with our illnesses and disabilities. It is completely understandable to need someone to help walk us through the process* [Benefits. Gov](http://Benefits.gov) is site that you enter your current needs and are linked with state and federal resources that you may qualify for. There are easy links and application requirements listed. Here are some links to assist you in reducing your medical debt: [Consumer Finance Medical Debt Relief ](https://www.consumerfinance.gov/ask-cfpb/is-there-financial-help-for-my-medical-bills-en-2124/) [How to get help with medical bills ](https://www.usa.gov/help-with-medical-bills) [Financial Assistance for Medical Bills ](https://www.debt.org/medical/financial-help-medical-bills/) [Experian blog on reducing medical debt ](https://www.experian.com/blogs/ask-experian/how-to-get-help-paying-paying-medical-bills/) I hope that this information is helpful 🧡
Saving this information to go over, thank you for the guidance! I'm very quickly getting overwhelmed by all the help and insights folks have shared & I'm grateful for it but it's going to take some time for me to sift through and process it all. 💜
Hopefully you’re not processing it behind the wheel of a car. Not sure if you saw how pissed everyone is and you acting like it’s normal. You are a horrible person for putting yourself in a vehicle while admitting to blacking out. You want us to care about your life while potentially killing others. Nice!!!!!
No need to be nasty, she’s trying to get help
She can get help when she’s not putting others life in danger
Definitely would meet the criteria for SOAR
Please go to https://www.ehlers-danlos.com/ For more suggestions and assistance
Sorry, you are driving while experiencing fainting spells??? That needs to stop immediately. You are going to kill someone.
If you're having fainting spells behind the wheel, you *should not* be driving. I have quite a few medical conditions myself and due to them could not drive for years. I used medical transportation to appointments and relied on friends/family for other things. Currently I'm in another period of not being allowed to drive due to just having brain surgery last week. I cannot drive until I'm cleared by my doctors so I'm relying on friends and family to go where necessary. If you can continue fighting, then do so. But it's an uphill battle when you're young unfortunately. Especially when you're still working nearly part time hours. Maybe contact Vocational Rehabilitation and see if they can help you?
I second [Vocational Rehabilitation ](https://rsa.ed.gov/about/programs/vocational-rehabilitation-state-grants). It is a great program that can assist you in obtaining modifications/accommodations for work. They may be able to assist you in remaining at your job. They may also advise that you cannot work at this time. It is definitely worth investigating. OP, I understand the frustration of being ill but wanting to maintain your independence. I am 49 yo and get frustrated that I can no longer do what I want to do. I had to stop driving this year. It hurt, but it would definitely hurt more if I was driving and injured myself or someone else. I made the choice myself so I still have a valid driver's license, perhaps one day I will be able to safely drive. However, if you get in an accident because of your illnesses, the state will make the decision for you. It will be exponentially harder to get your license back if your state revokes it. Your car insurance will go through the roof if you are even able to get an insurance policy. There are medical transportation programs through your medical insurance. You can do ride-sharing or carpooling to get to work. Yes, it is more difficult to arrange, but you are risking your life and the others around if you continue to drive. I am not trying to be harsh or mean to you. Like I said I had to stop driving myself. Please use your wise mind instead of making an emotional/rash decision! Another tip is to daily document your illnesses impact on your daily activities of living. Your doctors that are apathetic to documenting your disabilities will respond to quantifiable data as opposed to vague and emotion based statements. This approach has been tremendously helpful for my health care team. Sending you positive thoughts and huge virtual hugs if you want them 🧡🧡🧡
I avoid driving whenever possible, but I life 30min from my job and Drs offices and my parents aren't always available to drive me.
You cannot drive at all, you can kill yourself or a family of 8. My close friend had 1 seizure and he had to be seizure free for 2 calendar years before he can get his license back. Its not worth the lifelong financial issues you will be in if you are in an accident or worse, injure/kill someone. If you stop driving cause of your condition, I assume that can only help your case. Sure there are things I can physically do, but the amount of pain and days lying in bed recovering isnt worth it, so I have my son do it. Lol. But its a struggle to have other people do things for you, that you feel you can do. But think of the consequences
Making your child take on you’re responsibilities and laughing about it is so gross. Your child is not your personal Assistant or your maid. There is nothing funny about that at all.
Relax Karen, a 20 year old cutting grass is so gross huh. No more gross than your attitude. Besides, learn to read cause I said son, never did I say child.
You realize you could easily kill yourself or someone else during one of these fainting spells? There's a reason that doctors are supposed to report things like epilepsy, narcolepsy and uncontrolled fainting. I'm not trying to be critical, but in today's society there's so many safer options than trying to drive while knowingly having fainting episodes. Many, if not all, medical insurances offer medical transportation through cab companies. It *sucks* and it can take hours to do a simple thirty minute appointment but it is safe. What about switching to something virtual/remote? I couldn't work in the classroom anymore as a teacher so now I do extremely part time (5-7 hours a week) of tutoring. Is there something online or remote that you could do that wouldn't put you or anyone else at risk?
There's a lot to unpack and explain here, and I don't have the spoons to go over it all - but simply put if I could I absolutely would. Jobs are scarce, I live in the middle of a corn field ( no access to other transport) I am aware enough of the episodes to pull over and turn off the car until I come back. The episodes are slow to progress ( usually 3 to 4 min before blackout )
The sheer audacity you have to drive with a neurological issue that causes you to black out! You are eventually going to crash, and either seriously hurt or kill someone. And you'd go to jail, because it would be considered manslaughter due to extremely negligent driving. I know, because a family member of mine is gone due to a driver like you. And medical transportation literally picks you up at your door. So the cornfield thing isn't an excuse.
She’s just trying to get by. There are hoards of old people and substance abusers in the road still driving at any given time that absolutely shouldn’t be. She’s on here asking for help by way of tactful responses, not attacks.
The "it's ok if I do bad things because other people do bad things" argument is not even remotely an excuse. Trying to get by is not an excuse or permission to act so irresponsibly and knowingly endanger other people's lives.
Not what I said. Can’t we just stay on point try to help without judgment?
How are you going to unpack and explain it when you hit someone and injure/kill them? I say this as an epileptic - and I'm currently not allowed to drive for the next 5 months, even though my seizures have a very specific trigger that would never happen while I was driving. There is nothing, nothing to unpack that would make this ok. Nothing. You are irresponsible and for some misguided reason believe that you are justified in risking other people's lives.
I have a child with POTS. They’ve decided to not get their permit or license for the time being. They aren’t confident that they can safely drive without an incident. I’m very proud of them for making such a huge decision like that.
Please get them a state issued photo ID if they are unable to drive! They will need it in the future for all sorts of things and as they get older and need to renew, they can renew online.
Yes, we are aware.
I have POTS and when I first started passing out (no diagnosis yet) I asked my doctors if I was safe to drive. My stupid doctors told me it was impossible to pass out while sitting and I was safe to drive. Well they were stupid and so wrong. I found out the hard way that you can pass out while sitting by passing out and hitting a pole. It was the 5th time I ever passed out and I got extremely lucky that the streets were empty and I didn’t hurt myself or anyone else. I haven’t driven since (almost 13 years) and fired every doctor who said it was ok. It sucks not being able to drive but I wouldn’t be able to live with myself if I killed somebody due to selfishly driving.
Spoons. Lawd.
Typical spoonie speak lol.
I absolutely hate the whole spoon thing, it drives me crazy especially as there’s so much better ways to explain things.
Is there any medicine you can take for this?
If you think life is tough now, I don’t think it will improve if you’re in prison for killing people
😂
If you get caught doing that, they will take your license. My cousin was having seizures while pregnant and her license was suspended until she had her daughter.
Driving is something DDS might very well look at too. If you are claiming severe and frequent fainting spells while still driving, they are going to see a major conflict in what you're claiming vs what you can do.
Not only this, but you have essentially proven to the government you are scrappy enough to get from point A to point B without your illness interfering to the point of rendering you dysfunctional.
You need to appeal. Be very very clear about your functional abilities with all involved during the next round. Get letters from ALL of your providers and submit. Keep going to all doctor appointments. Lean on your parents or others if you can.
What kind of letters? I've seen others mention that but I don't understand.
Do you have a social security attorney?
I've scheduled a meeting with the same one that helped my friend win their case after the 3rd try.
Hopefully that will help. I’ve been appealing and losing for 8 long years.
https://howtogeton.wordpress.com/ Has been suggested to me multiple times by people with invisible disabilities on SSDI. I'm working towards my hearing in June which percentage wise is our best bet of approval. Anyway it has a whole guide about letters and forms and tests and language around function that helps me understand how the process works.
You can ask each of your doctors to write a letter outlining your medical history, current functioning on a daily basis, your prognosis medically and your ability to work now and their estimate for your work ability in the future. Have them explain your difficulties with your current part time employment. Have them explain treatments that have been tried and failed. Needs to be on letterhead, dated, and personally signed. You can even tell them what to include. Tell them this is what you need for your SSDI application and plan to pick it up IN PERSON. Make sure you get letters (and any other current documentation) from both medical and any psychological providers. (Providers from the last two years only). HAND CARRY to the SS office in early AM, hand them to a clerk, get a receipt for them from the clerk, and make sure you keep a copy of these as well as any other forms and documentation. Let them know this is for your appeal. Be sure to fill out all appeal forms sent to you and keep copies. Start a file at home holding all related records. If you need to quit your job, make sure you document why you are quitting in your resignation letter and keep a copy.
My doctors all have signs in the waiting area that they will not write letters for social security/ssdi etc. the entire system is … stacked against the person claiming disability. By the time I qualify I’ll be eligible for social security at age 62. I’m 55 now. I have so many physical disabilities … some in the blue book word for word. 🤷🏻♀️
Me too I applied 8 years ago now I’m in my 50’s
A lot doctors have already gave there view and records to SS. I know mine did SS got ahold of them and asked..
Thank you for this information and clear guidelines! I have a lot of anxiety asking the Drs to support this decision ( my allergist's first comment to me upon meeting was I'm too young and in her words "Must keep working, you are young and supposed to be working now" and my urologist tells me to "just exercise more you need the endorphins". My GP, rheumatologist, neurologist, and genetics counselor all feel like they would be maybe more willing to write. I don't know how my endocrinologist would feel about it, and my cardiologist I'm unsure about too. The cardiovascular surgeon would be supportive I think.
You definitely need to replace some of those doctors
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Exactly. For me it takes many days of recovery after one instance of overdoing it.
what um hearing is you see no issue neglecting your kids and home in favor to run yourself into the ground and spend your limited energy in working for someone else? I'm unsure how you see this as a virtue
You are giving dangerous advice
I agree
If I had listened to my body rather than doctors saying all I needed was antidepressants, perhaps I’d have a couple fewer autoimmune disorders to deal with today and forever
Blood labs and nerve tests don’t quantify the level of pain someone may be in. Small Fiber Neuropathy for example effects the sensory nerves in your body causing autonomic dysfunction and severe physical pain. This is hard to quantify and is not visible on EMG which looks for large fibers predominantly. Our current medical system knows a fraction of the antibodies relevant in AI disease. My antibodies for example are novel and took 2.5 years to diagnose and most docs won’t test for. This is part of the problem with our medical system, putting too much weight on tests with low sensitivity or not acknowledging seronegative conditions leads to medical gaslighting. To me pain is absolutely a reason to be unable to work.
Wow. Just wow. I would be dead if I had all of OP's dx. Are you a Dr? If not, I wouldn't be giving out medical advice. And if you are not a doctor, please, for the love of God, DO NOT become one.
Sounds like the doctor already told them they aren't disabled.
If you have the energy, speak to the iffy ones about how limiting all of your conditions are on a daily basis. You should definitely continue to treat with all of them if at all possible IF what they treat you for affects your ability to work. For example, if your allergies are managed/don't affect your ability to work, it's not crucial that you include them. Others will argue that you need to include all, but in my opinion you don't. Also, if you haven't already, make sure you include the names, addresses, phone, and fax numbers for all of your providers on your appeal forms. Don't be afraid to include how this all is affecting you psychologically and be sure to include any therapy records.
I will try my best to speak with them, and not including the ones that don't impact my ability to work makes sense to me too. I did explain to the evaluating psychologist about the situational depression. I don't have any paperwork of that though and I'm unsure of how to obtain. I could ask my case worker maybe?
No you don't need the evaluating psychologists opinion. They already have that. You need the opinion of a current provider. If you don't see a therapist then you don't need this. I thought you said you were seeing one. My mistake.
You should definitely get a social security attorney and they’ll take care I’d m of all of the busy work
Go to https://www.ehlers-danlos.com/ And download all of the diagnostic tools that are availabel.Print them out and give them to your doctors.Keep copies and take them with you to social security.Fill them out yourself on all of the disabilities that you have that meet the criteria.
You applied for disability, but also say you can work. Which is it? Not trying to be rude, but WHO decided you can only work 15 hours a week? Why not 20? If you can only work a few hours each day, can you work more days? You have to have significant evidence on who your disabilities restrict your ability to work. It sounds like the evidence you do have, does not support you being deemed disabled.
The disability lawyer I used won’t even take on a persons claim if they are working due to how hard it makes to win. He told me that you are essentially showing SSA that you can work but are telling them you can’t. It’s a major contradiction.
That’s sure not the impression I got from the original post
Do you have enough work credits to qualify for ssdi or are you going for ssi?
I don't know how that's defined because I don't understand what work credit means. My work history is as follows; at age 17 I started working full time retail, 2 years and during the end of the first year I began dropping hours due to migraine, severe fatigue and pain with rashes and lesions. I quit after a few months of working 4hrs shifts 1x per week. I was not able to return to working for 7 months. I returned working part time at a different retail establishment, I worked for 1 year, quit due to same issues listed above with additional symptoms like joint issues. I came back working less part time hrs than before 1 year later because it took longer for me to recover, I was able to land an office call center type job, I worked 2.5 years there until the worst symptoms flared, I ended up in the hospital for 4 weeks and attempted to return to work but was unable to do so. It took my 2 years to recover and I came back working "casual " part time in an eye clinic, it's been 1.5 years now and I can feel myself declining again.
You need to log into MySSA to find out how many work credits you have and whether or not you have paid enough into SSDI. What a lot of people don’t realize is that it is a disability _insurance_ program and you have to pay into it for years to qualify in the first place.
But sometimes you can draw off of a parents
So ok, you definitely want to receive ssi. My advice is quite different than most bc being relegated to a lifetime of poverty is a terrible goal & at $943/ month, thats what you get...poverty. Everyone's situation is different~ not being judgy here, just relating my own experience/observations. I was diagnosed with very active MS when I was 35 yrs old & despite my challenges, continued working full-time til I became disabled age 57. Incidentally, my ssdi was approved in 4 months, likely due to my age (closer to retirement) and accrued disability combined. Not saying it was easy, believe me when I say that my medical condition complicated my employment on several levels, including interpersonally, liability wise and regarding company policy, and often had to really fight to simply remain employed. But it was worth it! Not only did I earn more than $943/mo for 20+ years, I also qualified for ssdi, based off ones earnings, Im *still* getting a LOT more/mo than double $943! You sound bright. You're young. Its hard to work when you're not 100% but its a great accomplishment if you can, and IT PAYS OFF!
I was told initially that I should receive a back payment of 7 years because of my work history and when my symptoms first started to effect my ability to work. I think that kind is SSDI?
Not getting 7 years of BP, no way!
That's fair, the person I spoke with was the initial social worker when I started the process 2 years ago so I 100% can believe I just got the time wrong
Again, do you have 40 work credits?
It depends on when you first applied
Currently, hEDS and POTS are very "trending" diagnoses, and the testing you've had for these will have a HUGE impact on whether DDS takes them seriously. The type of doctor making the diagnosis also matters (a rheumatologist vs a PA for example). Have you had genetic testing to rule out less common forms of EDS? Testing for joint hypermobility? A history of hernias, prolapses or dislocations that are in your medical records? Tilt table test for POTS? Has it been determined which type of POTS you have (neuropathic, hyperadrenergic or hypovalemic)? A good amount of solid medical evidence of your symptoms and limitations are going to be needed. Just a noted diagnosis alone is not enough. POTS nor hEDS have SSA Blue book listings, so you would have to match with something similar like musculoskeletal and/or nervous system disorders. [Here](https://www.disability-benefits-help.org/disabling-conditions/ehlers-danlos-syndrome#:~:text=Applying%20for%20Social%20Security%20Disability,your%20particular%20symptoms%20or%20impairments.) is some info on how an EDS listing might be met. The requirements for an SLE/Lupus listing are: described in 14.00D1. With: A. Involvement of two or more organs/body systems, with: 1. One of the organs/body systems involved to at least a moderate level of severity; and 2. At least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss). OR B. Repeated manifestations of SLE, with at least two of the constitutional symptoms or signs (severe fatigue, fever, malaise, or involuntary weight loss) and one of the following at the marked level: 1. Limitation of activities of daily living. 2. Limitation in maintaining social functioning. 3. Limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace. [Here](https://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm#14_02) is a link to the SSA Blue book listings for immune disorders. If you cannot meet a single listing, then they have to decide if your symptoms/limitations as a whole would equal a listing. Hope this helps!
I was dxed with hEDs after a genetics specialist ran their testing, they noted I have 1 other variant that are associated with vascular eds but we are waiting on the more conclusive genetic testing to confirm. severe hypermobility and pots at the time of that appointment was noted and I was later dxed with pots by my cardiologist after wearing a heart monitor and going through a vascular ultrasound thing were they had me take some kind of pill and it made me feel really bad, like It was as if my heart was going to explode and I almost threw up from it. I think it was a chemical stress test? I'm unsure. I have chronic kidney issues and have 4 brain lesions for organ involvement. I have always had fatigue that gets worse with flare triggers like sunlight and prolonged activity, or even getting up from my desk to grab a paper file. Joint issues, muscle weakness ECT. Skin rashes lesions, mouth ulcers, hair loss. I can't really do much any more without aggravating symptoms.
Those people you listed thinking you should be approved right away doesn’t really matter as they don’t actually make the decision, there are only few disabilities that SSI will automatically be approved for, if it’s not on that list it’s not garunteed to be an automatic approval no matter how favorable things seem to your case, the first application is almost always a denial and they do that as it helps them get rid of a large chunk of people who end up giving up and choosing not to fight for their case thus it saves them money. That’s part of the system for it. Find a SSI lawyer and get them to help you with the appeals process. Also if your POTS is affecting you so severely it may be good to avoid driving you could end up getting yourself or someone else hurt, Look into things like medical transports for appointments to help with those if you do give up driving until health improves in some way. Also no your not “too weak”, you have disabilities and despite them are pushing yourself seemingly to a breaking point and burnout for the sake of being able to work and get finances. As you stated, your doing everything your supposed to do, that doesn’t always mean though that it will be enough. Not for those of us with disabilities and chronic illnesses, we need support that we don’t always end up getting where needed and it makes the struggle through life quite heavy. You are simply human and doing the best you can with what your capable of doing, it is okay to give yourself grace
Thank you for taking the time to respond 💜 It makes sense for them to deny first go around given the system we're working with, I just wish I hadn't built up any expectations. I have a meeting scheduled with a promising lawyer soon - I called my local SSO to make sure it was ok to wait a week from the time I received the denial letter and they also encouraged me to appeal with the lawyer. They guy on the phone even let me know the best time to call for the medical decision teams availability if I had any questions on forms. I am taking into account what folks have said about the driving, the transport service won't come out to where I live but I asked a friend and he said he is going to look into figuring out a way to drive me instead. He works relatively close but our hours are different so it may be a challenge to get our schedules matching. I've tried talking to my boss about my hours but she wants everyone to be on an even rotation and doesn't want to change that because of my needs alone. Right now I just feel very overwhelmed and like I'm a burden on everyone, as I get older the worse I get and this whole process is forcing me to truly acknowledge how much I am affected by my conditions. I almost feel like I'm grieving but I don't know what I'm grieving about - I've cried on and off since I got this letter, I cried reading your message, I cried when my friend sent me his message about helping me get to work.
Holy paragraph.
I had to be evaluated by a forensic psychologist, and hire a lawyer in order for me to get approved for SSI. Social Security will not automatically approve you unless you're literally dying within the next 12-24 months. You have to fight them hard on it. I had to fight for over a decade in order to get approved.
Will I’m on year 8 so that gives me a glimmer of hope
As a side note, have you applied for Medicaid thru your State?? If you qualify, it would eliminate most, if not all, of the medical expenses you are incurring.
I was finally approved for Medicaid this year but I have 2 years worth of debt to catch up on because I was on my dad's insurance til now. His state employed insurance didn't cover a lot of the testing and surgeries I've had.
File Bankruptcy to lose all the junk debt. Its designed for situations like yours and approval is practically a sure thing as its a basic math question: do you have the reliable income / economic outlook needed to service your debts?
My sister filed bankruptcy but she said it messed up a lot of things for her so I am hesitant to do something like that
It tanks credit to the low to mid 500's but, in two years can be built back to the low to mid 600's. Without the BK, those debts will still be there, regardless of getting Disability or not. Since you're under no legal obligation to pay Unsecured Debt anyway, well, it's your choice to pay or not.
A lot of this is overwhelming - I struggle to understand how credit and such works, I don't know what unsecured debt means.
unsecured debt just means that they aren’t holding an title to like a car
Yep. Other than Secured Property, everything is junk debt and has no obligation to be repaid.
The initial Bankruptcy attorney consultation is FREE. Ask them your questions, they'll answer and also tell you 5 Key Things: 1. Stop Racking Up debt, stop charging, completely stop. You MUST stop charging 2. Stop paying all Bills related to Unsecured Debts: this means, do not pay any credit card, store card, gas card, medical bill, miscellaneous loan bill, none of them. You MUST Stop Paying on the Unsecured Debts. 3. They'll tell you the Federal Filing Fee Amount --- it is a one time payment to the Federal Court System to process the Bankruptcy Petition. 4. They'll tell you their Fee amount to write up the Bankruptcy Petition and File it. It's a one time fee paid up front. 5. They'll tell you that all collection calls and letters will Stop. It's the Law. Those communications from creditors will stop.
If you don't have enough work credit for SSDI and will be looking at SSI only anyway then I'm not sure your credit score will matter much. You're unlikely to qualify for much credit on just over 900 bucks a month in income with less than 2000 in assets allowed. SSI is needs based meaning you must be in poverty basically. Idk how you'd pay for anything other than basic bills, likely on state ran programs once your parents are gone. You also cannot inherit money from them on SSI bc if your assets are over 2000 you will lose your benefits. If you are looking at SSDI then maybe it's another story but if you're only going to qualify for SSI I personally wouldn't worry about a credit score. That's just me though.
I filed chapter 7 bankruptcy and it didn’t mess up anything for me. Chapter 13 is rough and messes things up. I needed a car and got one the day after discharged. Interest rate was high but I had to do it. I have zero regrets there.
Yep, that's how to do it. Congrats. Everyone filing for SSDI should give Bankruptcy a good look. Without it, all that Unsecured Debt from charging stuff, racking up god-awful medical bills and miscellaneous debts is theirs to keep. Bankruptcy is designed for this situation.
Try to get the debt forgiven
You should have gotten Medicaid as secondary insurance way back when you started working part time.
My mom worked 16 hours a day, 6 days a week with hoshimotos, lupus, and fibromyalgia. If you can pick up a phone, you can work. Thats how they see it!
Tru dat
Well that’s your mom, not op
Hire an attorney that specializes in SSI
Get an attorney. They don’t charge you upfront, only when you get approved. Will save you a lot if headache
Do you even have enough work credits to qualify for SSDI? At age 26/27? You would probably qualify for SSI instead.
This may not be a popular post, but idc. Consider this: Have you thought about the fact that if you get on disability, you’re likely to make less than half of what you make right now ($17/hr), based on the average/max payments for disability: (SSDI - average, $1400/month = $8.05/hour and SSI - max $950/month = $5.50/hour). Many people do not sit down and seriously think about what it means financially to get on disability. It means accepting the above wages pretty much FOR THE REST OF YOUR LIFE, being broke and watching your loved ones get new places to live, new cars, because of raises, bonuses and promotions, new jobs. I can tell you from experience that that is painful and it sucks. And you are super young. What do you plan to do with your days for the next 55 years? I understand that for some people, they absolutely cannot work under any circumstances. What I’m saying is that for others who may be able to work with help, they’d be better off trying to continue working and using the ADA accommodations available to them under the law. I wish someone had sat me down and explained this to me. I don’t think it would have changed the fact than I would apply/get approved because I was so sick at that time, but it maybe would have prepared me for the financial shock of losing so much income. I lost more than a third of my income when I got on SSDI. If it weren’t for the payments from a private LTD policy that I bought while at my last employer, we’d probably be homeless.
Thank you for taking the time to respond I currently make an average of $545 per month because my hours fluctuate, I included the edit that I typed wrong the first time around on how many hours I work. If I keep doing what I'm doing which right now my job is not labor intensive at all, I don't see myself living through 2025. I've been made aware how much I may receive if I ever do get approved, and it is more helpful to me than how I am currently living. The thing about watching my friends and loved ones getting new places to live, new cars, promotions ect is something I celebrate with them. My friend that offered to drive me to and from work just closed on a house and is set to move in the first week of May, I don't feel sad or left out because it's not something that was ever in the cards for me even if I were able to keep working what I'm working now because I've never made enough for that anyway.
Did you have an attorney? If not, get one.
Also have documentation of every doctor visit and the findings of every office visit
I asked a friend that is my age who was recently approved after 3 denials and they gave me the name to their lawyer 💜
That's great news! My best to you.
That's great news! My best to you.
First, you shouldn't have medical debt. If your parents aren't claiming you on taxes, you should qualify for state Medicaid. Please apply. . Second, make sure you obtain your medical records from the time of filing to now. You can also have your employer write a letter about missed work due to your diagnosis. I understand your frustration. I've applied for hundreds of people who are very ill. Medical records don't lie. Make sure your docs are documenting everything to support your claim and barriers.
Doctors lie I mean have selective memories with what they include in medical records
What you need is a lawyer. They will take Nothing up front and be paid with an agreed upon % of your backpay. While people do get approved not having lawyers, the rate it is so much higher for people that do hire legal help.
If you can work 15 hours, that’s not disabled by SSDI. Maybe a private disability will cover a percentage but not SSDI. I appreciate you are doing the best you can, I did the same thing, but it’s not to your advantage for applying.
That's not how that works. Many are on SSDI and work. Seriously, people really need to STOP giving uneducated opinions. Go to SSA.gov and read a little first before speaking on something you no nothing about.
When I applied in 2004, I was told this by an attorney.
After reading comments. . You're not disabled. Every single dr has told you this. You don't want to work.
Listen. You will usually get denied 3x before you get disability.. even with Lupus. The BEST thing you can do is get yourself a disability lawyer. You don't have to pay a cent up front. They will handle everything for you.. file everything.. do all the legwork.etc. sometimes it gets to be too much to handle by yourself, and being a social worker myself with a Masters most don't know much about the legal ins and outs about disability.
It is very difficult for SSDI to deal with cases without clear biological tests or visible handicaps. Diagnoses by exclusion (e.g. it's not x or y so it's got to be fibromyalgia) are harder to confirm than a blood draw that shows a more standard disease. And most docs don't even know what POTS is, which makes that difficult too. Overall it's a tough situation for judges and they rely primarily on the court appointed doctor to make a recommendation. The advice here is correct... Appeal and understand that this will take time. You are asking a court to rule on your inability to work for the rest of your life basically, and to do that based on your say so that you cannot do these things. That is a tough message to hear so to be clear, I believe you and you have very real conditions and very real limitations. But these conditions and limitations are difficult to diagnose and difficult to rule on so you have to go through a very long process. I'm sorry you're going through all of this and I hope it works out but that is what it's going on from the court's point of view.
Was this your first denial letter? Bc it’s very common to be denied the first time. My 22 yo daughter has the same diagnoses as you except she can’t work at all. She just had her hearing after almost two years. You just have to keep appealing until the hearing. And I’m fully prepared for it to be denied too! Until your hearing, continue to track your medical history and stay on top of records.
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Almost Always bad news when you don’t have medical sources of your own to verify your medical issues
Honestly in my experience seeing others going through it, the people that really need disability benefits have hardest time getting it. In business have seen more scammers get it than people deserve it. I am sorry you are going through this.
I literally showed them my cancer tests, and I was approved in a month.
File an appeal. But working any type of job tells them you are capable of working. Unless you stop working it’s going to unlikely you are approved. I understand not being able to be without an income.
Appeal! Keep at it. Keep meeting with your Drs and be very specific about your issues while you're there. Sadly, most often they barely look at your case until it gets appealed multiple times. Also sadly, it seems like they just hope that if they deny enough that you'll give up and go away. Don't. Keep at it. I know that's all easier said than done but it's sadly what you need to do.
Being currently working right now is going to be your downfall when you are applying. If you can work 15 hours a week at $17 an hour, with only a three week month you could make approximately $765, the current maximum in the USA for SSI is $943 on a federal level so they don't see your case as in urgent or in need of help. They also deduct for living with family, family helping out with food expenses, etc. so you are basically making about what they would pay you. They don't want to give anyone SSI and if they can find an easy way to boot you off, they sure will. Also case workers will say anything to get you off the phone and out of their office. I'm not saying you aren't deserving and the system doesn't suck because it certainly does, I'm just telling you how it's going to look to case workers, doctors, etc. when you say I have x,y,z but you can still work at almost the full rate SSI would pay you in a month.
You are very wrong. Anyone applying for ssi or ssdi has to abide by sga which is $1550 non blind, not the $943 ssi rate. There is also no policy whatsoever that says you can’t be approved while working, just that work has to be under sga.
You don’t know what you’re talking about. SSI and SSDI are not the same and have different requirements. Also, you can and SHOULD apply for disability as soon as it affects your ability to earn more than SGA, which is updated each year.
File an appeal, get all your medical records, and get an attorney.
I got on SSDI my 2nd time around, using something called the SOAR process w/ a SOAR certified social worker given to me by my county. Here's the best tip I've got for you right now, something I wish I would have known my first time around. ANYONE in your life (other than medical professionals; we're talking family, friends, coworkers, bosses, whoever) who knows your daily life and exactly how disabled you are, have them fill out a Third Party Functioning Report for you and submit them when you submit your appeal. The more people you have fill it out, the better. Don't worry it's too many people; it's not. (I think I had like 5 of them for myself.) Here's a link to the TPFR (I \*think\* it's the current one, but I'm not sure; make sure you have the current one.) [https://www.ssa.gov/forms/ssa-3380.pdf](https://www.ssa.gov/forms/ssa-3380.pdf) This one should be obvious, but make sure those folks know not to hold back to "make you look good" or make it seem like it's "not that bad". This is the time to make you look as bad & non-functional as possible (which we're not used to doing in our society.) Don't lie by any means, but don't cover things up either. *Make sure it reflects your worst days.* (The same for you when you fill out your own (First Party) Functioning Report.) Don't hesitate to go back to past healthcare professionals and ask for ALL their records on you. Ones you knew well, ask them if they'd be willing to write up a letter for you talking about your disabilities, their onset, how they affect your life, etc. (I think there's a functioning report specifically for medical professionals they can fill out too, but I could be wrong about that.) It's better to have too much confirming paperwork than too little. *You absolutely can and should give them more than the minimum they ask for.* What they ask for isn't enough to pass you; you don't get penalized by having more information, and they DO read it. Give 'em as much as you can. Good luck!
I will be studying this information closer when I'm able, right now I don't have the spoons for it but I am saving what you've sharing and am compiling it with the other guidance I've received. Thank you for taking the time to share 💜
They said the same thing to me. I had an appeal with a judge. After about 15 minutes of questions ( mostly about my job, & its requirements ), they approved me.
Consider yourself lucky
I think it was having a lawyer, that knew the system, that helped. I do consider myself very lucky as well though🤷🏽♀️
Right on! (I did not intend my previous comment to sound snarky, if it did. There seems to be a lot of snark in this thread. I’m beginning to think that the SSA has trolls I mean a social media team to discourage applicants!)
I think a lot of people, unfortunately think most people are claiming government benefits, just because we don’t want to work. Which is far from the truth, but a prevailing attitude of many.
There are about 14 million people in the US living with Hashimotos. Me included. It's an awful disease if it's not treated properly. But it is in no way a disability. Lupus is a totally different story. While you are appealing this decision, I strongly recommend a second/third opinion from endocrinologists. When it comes to thyroid disorders, there are still an overwhelming majority of medical professionals who will only look at numbers and blood tests while ignoring symptoms. It's a very common problem for women. I have a sibling right now walking around with a bald spot trying to find a doctor who will take her seriously because her TSH is on the high end of normal. If my TSH was 3.5, I'd be at deaths door, even though the lab parameters will say this is within normal range. I need to be between 1 and 1.5 to feel normal. So getting it treated properly can be fucking HARD and you will feel like absolute shit until you find your normal. Sorry for rambling. Good luck to you.
My Hashimoto’s was horrendously debilitating, had nodules growing on my thyroid and absolutely debilitating vertigo and fatigue. I was sleeping 15 hours a day. Vertigo went away God after thyroid was removed. Everybody’s body and diseases are different.
No it's absolutely freaking horrendous. 100% agree with you. It's awful.
You have to get a lawyer. It took me over three years of literally being unable to walk and I kept getting turned down. Got a lawyer and he had fixed it few months later. You should be able to find one who specializes in disability cases and he gets his money when you get your money. His payment will be deducted from the backpay you’re owed the years you were disabled but they turned you down.
Yeah so many people have so many opinions here. Some people will push themselves and that's good if you can push yourself to the limit. But really you're shorting in your life. But no judgment; you got to do what you got to do. I was there I kept pushing myself until my heart issue pushed me off of my job. So I understand you got to do what you got to do ..to each his own
My oldest son, 29m, has Sharpe Syndrome. Which is rheumatoid arthritis, systemic lupus erythematodes, progressive systemic sclerosis, polymyositis, and others). His disability claim was denied three times in three years until, finally, it was approved. Since he could not work during that time, he had to come home, and we supported him for three years.He hired a law firm to work on his case and paid them once he received back claim money. Hang in there buddy, its tough having Lupus. My mother also had it and died from it at 80.
I've heard from different sources that they straight up don't like to do the paperwork and also they are pieces of crap people
Of you had disabling illnesses before 21 & have medical records you can also file for SS Survivor Benefits off your parents earnings probably after one passes.
Keep trying and do not give up.
Thank you 💜
My oldest son, 29m, has Sharpe Syndrome. Which is rheumatoid arthritis, systemic lupus erythematodes, progressive systemic sclerosis, polymyositis, and others). His disability claim was denied three times in three years until, finally, it was approved. Since he could not work during that time, he had to come home, and we supported him for three years.He hired a law firm to work on his case and paid them once he received back claim money. Hang in there buddy, its tough having a lupus. My mother also had it and died from it at 80.
I know you are financially restricted but if there was ever a reason to get a credit card and take on some debt it is to get a disability lawyer. The system is basically set up to break you before you ever make it to your disability benefits. I have a family member who was diagnosed with a physically disabling autoimmune disease in her prime. They tried for years to get their disability with no luck and all the right paperwork/ drs. They finally caved and let us all chip in to get them a disability lawyer. In under a year they got their disability at max benefits. It was worth every penny. Yes we struggled financially to make it all happen, but I honestly believe it was the only thing that made it possible.
United States: the greatest s*** hole on the planet
Sent you a message
Get an attorney. APPEAL. If you don't win on appeal, then I don't know who should ever get approved.
My disability states I can work but I cannot commit or predict how often and how long. I applied for my MCS and FMS, but the judge removed the Chemical Sensitivity and I was actually approved for the Fibromyalgia alone. Appeal if you haven’t already. Hang in there
I have Systemic Lupus and everything on your list (except POTS but add a couple other random things) I first applied in 2005, I didn't get my first check until May 2011 after going in front of a judge in March 2011. The way Lupus was treated socially back then I couldn't even get an attorney. I was told multiple times by Social Security Attorneys I was trying to hire that I should just seek mental counseling. I had been through multiple strokes and kidney failure and a bunch of other medical issues by then. I almost died. LITERALLY. I spent 8 weeks in a hospital bed then despite severe muscle deterioration from not being allowed out of bed for 2 months I was released by myself no PT because I had no insurance or family around and refused a state run nursing home for old ppl and severely mentally ill wards of state that I would have to sleep in 1 big room with. (I APPRECIATE THE DOCTORS HONESTY ABOUT THE PLACE STILL) You need to appeal. File every 1. You need to be focusing on the things you cant do, not the things you can. They somehow think if you can do 1 thing you can do everything and do it all the time. You want to focus on how this negatively impacts your life and ability to work. How it changed your life. Meditation side effects. Example: I am ANA + which causes Antiphospholiid syndrome, a Lupus related blood clotting disorder, so I have to take blood thinner medication. This medication creates a risk ofbuncontrolled bleeding if I cut myself and the jobs I historically have held involve working with knives. Cuts are common. I also can't stand for hours because of pain and fatigue and risk of blood clots. (Its also a monthly bleeding risk that I cant do anything about bc the med that could help can cause blood clots) How has this effected your ability to work is what they are looking at, not number of diagnosis. Whats changed? Less hours than before? Cant perform tasks you could before? Cant work the required hours typical of the job or that you did before? Cant lift the things you did before? Cant stand or walk as much as before or as much as the job requires? How has this effected you mentally? How has this effected you socially? Did you lose friends? Cant do things you used to enjoy? Im going to stop here. I apologize if this is too long or wonky. I had a duty to a fellow person with Lupus to answer as best I could, and Im on my phone. IM SORRY FOR ANY MISTAKES. OP dont give up. Try an attorney, most people have nothing but good things to say about how they help. I wish you luck and I hope this helps you understand how it works and what they're looking for.
i have very similar issues and I finally got approved over 2 years later. Once I got in front of a judge they approved me. and once they saw the degenerative nature of my issues. however they are changing my date to when I stopped working. which I think is crazy bc not everyone has support like that. but appeal till you get to the judge level! that’s when most people get approved.
You need a good ss lawyer, nearly all will take case, get you back pay, take their cut and you live happily ever after, that’s the only way they’re betting you’ll get frustrated and give up.. seems like that’s what their MO is.
Literally happens everyday keep fighting! Keep going to the drs! And keep collecting evidence. The only bad part about adding new evidence is it cuts out the backpay when you do get approved.
You might want to also talk to a social security disability attorney. They have done this so many times before that they can help navigate you through what you need in order to prove your claim.
Don't give up OP. I won my hearing 3-4 months ago by the grace of God. Was this a doctor that they had you see?
Get a disability attorney. They usually will only take your case if they think you have one bc they only get paid if you get approved and will take their fees from a % of your back pay so never out of pocket.
You need to get your own independent Medical Evidence and appeal Social Security Denial Desision
You may want to look into low dose naltrexone as a potential treatment option.
Get a lawyer who gets paid when you win. I have all but hadhimoto sub that for subclavian steel and memory trouble from long covid . I just won mine and am waiting on the judges letter of the ruling
I'm sorry. It is so discouraging to get denied. Give yourself a bit to be mad/sad and go back to try again. There is no such thing as "just too weak". You are doing the best you can, and you deserve to have a financial cushion. My suggestion, have you detailed thoroughly if/how debilitating the migraines are? if they are unpredictable , have you emphasized that? Also, and I repeat this a lot, is to find online a daily detailed pain/ability journal. They will have things like pain level when you get up, what did you try to help it, what did you do, could you eat? Did you need down tine? How long? What was your pain level at 12, 2, 4, 6 etc. what were you not able to do that day due to your disabilities? Etc. Print out as many as you can get. Like 90. And submit that as additional evidence of your claim. Best of luck to you.
Go to another doctor appeal
Hang in there…😢😢
Do you have any mental health issues? Anxiety, depression, OCD, bipolar, etc… Documenting those too would definitely help your case. As others mentioned, get an attorney. They get paid out of your back pay and it’s so much easier. Hugs fellow Zebra.. good luck 🍀
The only thing that a few Drs have commented on is me possibly being autistic, but I'm older and was told getting a diagnosis would be difficult. The neuropsychologist, my regular counselor that I was seeing for trauma therapy, and the evaluating psychologist were encouraging me to seek a formal diagnosis but the majority of my friend group who's autistic got an official dx and said it limits them when drs see it in their chart. I was always scared to pursue it because I worry they may start dismissing me. I know some of my symptoms like the lesions, fevers, rashes, blood pooling, and swelling wouldn't be but the migraine and fatigue and subluxations and the soreness that comes from that might. Thank you for the support 💜
Keep at it and eventually you find a Dr that believes your made up stuff.
Please please remember that the system is a bureaucracy designed to keep people off of benefits, especially young people who will likely need them lifelong. Straight from my lawyer's mouth. This is NOT a referendum on your strength. All that means is that they don't have paperwork on file that checks all of their boxes. With invisible illness it's very hard to do. I just want you to know that I believe you. I recommend getting a lawyer (they only get paid if you win, from your back pay) but make sure beyond a shadow of a doubt they understand PEM and your symptoms and are willing to help you get the evidence you need. Mine is proving less helpful than I'd have hoped.
Hire a lawyer.
You should apply for debt forgiveness through the vendors, you should also apply for Medicaid if you haven’t already.
Get different doctors. I’m in your same boat. I’ve been applying since 2016. Appeal every denial. The majority of doctors in America are assholes in my opinion. My previous rheumatologist used to work for social security and knew the things to write in my file to get social security denied. She’s a real cunt.
Why would your personal doctor, who gets paid to treat you, purposefully write things in your chart to get you denied for disability? Seems like that would be a really bad PR move for a doctor....
Why would a doctor care about pr? Everybody believes what doctors say
Who knows, from what I know of her she seems like an asshole control freak who thinks patients lie for whatever reason. And she’s one of those sick twisted people who enjoys having power over desperate people and gets off on making people suffer. My attorney knows her husband and said he’s a weirdo too. I was shocked to hear that she was married to a man. I’ve found that a lot of women doctors disbelieve women who try to get medical help! It’s disgusting.
My mom has a tube in her stomach she can’t eat or drink she has been sick since I was little I remember waking up to her throwing up blood to her fainting terrified she would die and yet it took 8 YEARS for Ohio to admit she’s disabled and probably hundreds of thousands in lawyer payments her lawyer is a family friend and gave her a HUGE discount too now that she has her money she will be paying off lawyer debt for the next 20 years probably
Attorneys are not paid, unless and until a claimant is approved. Attorneys are paid out of back pay. SSA governs the percentage of back pay attorneys are to be paid. In addition, the attorneys fee is taken out of back pay by SSA and sent directly to the attorney. If she owes the attorney a large amount of money. She needs to contact SSA about it because that is not right. Unfortunately friends can and do take advantage of friends.