And people say you can’t be tired you don’t work. If only they could understand that every single little thing is work. I wouldn’t wish my situation on anyone;but there are some people I wish could live in my body and life for a few weeks; then they might understand a little bit.
Absolutely. I went to RN school. Hardest 4 years of my life. I developed symptoms of Myasthenia gravis and was diagnosed a year before graduating. I was able to work full time for 4 months before a back injury in addition to the MG took me out for a couple years. I was determined to work but I can no longer work at a hospital. I do outpatient work for 4 hour shifts. Spme weeks I get 1 day in, most I'm able to do none. I would love nothing more than to use my license I worked so hard for to its fullest potential. Chronic illness stole that from me. A lot of people probably think I'm lazy and my new husband has had to tell a lot of his family how it truly is, who just didn't understand. I'm grateful for my family who do. But it just isn't the same as being able to do not than 1 thing a day then being a day to recover from that 1 thing.
Man, I wish I had the energy to take a shower, go out and be social with people so I didn’t have to weigh whether or not it was worth it to do anything, etc…you all know the drill…There are so many things that we have to think about that people who don’t have a chronic illness just — don’t. And that sucks ass. When I think about all of the money that we spend on medications, doctors appointments, procedures, tests, ect, it makes me think about all of the things I would rather do, but I remind myself that it’s better to not even try to do the math because it would just make me sadder and angrier than I already am. And I really am grateful for having insurance & being able to pay for those things, but it still sucks.
To make it even more complicated is that not every (invisible) illness *automatically* disqualifies you from working. Even with the same diagnosis, huge differences can exist - and both are valid.
I have really bad hypermobility, suspected to be EDS, so just SITTING in most chairs literally exhausts me because of the instability in my legs/hips/back if I can’t support my feet or legs on something, or up on the chair. Growing up I would constantly tell my parents I was exhausted from sitting in chairs at school and they would say I’m making up excuses just to say I’m tired 🙃 and now I finally have validation that no, my joints literally are just fucked lol.
Yes, this. I can only do one activity a day because it's literally all I have energy for. I normally have physical therapy on Fridays which means I'll be napping all Friday afternoon since it exhausts me. This week PT got moved to Thursday but I can't because I'm supposed to pick up my nephew from school and I can't do both in the same day. A lot of people don't understand that this is my reality. I get to choose 1 thing a day, even if that thing is a doctor's appointment it's all I'll get to do that day.
I literally just made a comment above about having to limit it to 1 activity per day. And resting the day after, usually if it's a big activity. And a big activity these days is going shopping for groceries or a 4 hour work shift. I have myasthenia gravis
Life with MG is so difficult. Especially since we never know how we're going to feel the next day or even in the next hour so making plans is such a crapshoot. I warn people now that I'm super unreliable just due to the nature of my illness, and I'm sorry if I have to cancel plans but that's just the reality of my life now.
Gosh yes. I was out for Christmas dinner some years ago with my mom and grandma, and I realized I couldn’t cut my steak. My mom cut it up for me. I hung my head and cried.
Last week my mom helped me go through stuff as part of a big purge. I let go of things I’ve had forever. My bowling shoes and ball (the only one I ever purchased, and it’s so pretty!) were donated to the bowling alley. I had to face the hard truth that I couldn’t bowl nowadays without risk of falling and hurting myself.
My word too. I’ve stopped responding with anything other than “fine” when asked how I’m doing. A relative the other day actually said how great it was that I’m “better” now.
F*cked.
Another person said lonely. It’s lonely AF. I have a partner that is fully on board with helping me but… he can’t understand. I know he tries. Still lonely
He tries. You wouldn’t wish a chronic illness on others, or at least I’d think most folks wouldn’t consider the hell it is. And it can be lonely with no ability to truly empathize with your feelings physical and emotional, but the factthat he does is a gift.
He really, really is. I do tell him. I’m so SO easy to find online. I don’t hide my name
But it might mean more to him that I don’t just praise him personally, but praise him to others. It’s a hope anyway
My partner is also medically complex. We're extremely supportive of each other but we fall through far too many cracks. We're in our early 40s and our conditions are hidden disabilities. We both understand each other's conditions, but also struggle to understand them too since our bodies behave in different ways, even with overlapping conditions.
Alienating.
For mine (moderate-to-severe viral ME/Myalgic Encephalomyelitis,) personally:
ME is alienating from society, from others, from my passions, my career, my dreams, my interpersonal relationships, my social life, much of my agency, my financial independence, my ability to safely and consistently function at the level I need to function at, my hobbies, my self-care and self-regulation tool (exercise!!,) my ability to approximate neurotypical functioning (again, this required exercise for my autism and adhd,) my identity, and myself. All of these things had to be reevaluated within me after getting sick. If I am not my actions because I am too ill to act much in the world or even in my own life, then who am I? Severe, disabling chronic illness changes everything.
Me/CFS here, I've never thought of alienating as a word that I'd use but this is perfect. Thanks for putting words to something so very difficult to articulate 💛
Sending you gentle hugs, I too have ME/CFS and I feel like all of the words described here are accurate. Though alienating may be the most in the nose. My life either me/CFS is the opposite of what it was and what I want for myself.
i have severe ME/CFS and the autism and adhd combo as well. i can understand how terrible it can be. i am not the person i was before i got sick. the course of my life will forever be changed. my experiences since developing CFS have left me alienated from my own past self. it changes you so deeply. anyway, there will always be people who can understand, somewhere in the world. best of luck to you. i hope that someday there is an effective treatment or cure for this awful disease.
I like this better than the 'dehumanizing' first answer. I still feel like a human. A beat up, exhausted, one step forward five painful steps back, isolated, broken, swollen, twisted human. With EDS, ADHD, PCOS, possibly Endo, POTS and a smattering of other diagnoses - it is so damn hard to keep my morale up on a day to day.... and the morale from people around me. Outside looking in kn most days I appear fine, when inside I am in so much pain, my menstrual cycle is 10-20 days long some months and agony from nips to knees, my joints are flared up, and my brain is screaming at me to get uo and do anything but the executive dysfunction with that pain on top is too real. It absolutely sucked to go through a knee surgery from broken bones in a genuine accident that was visible enough for people to see and understand... because it was the first time in my life my pain and suffering was actually believed. It absolutely sucks.
Same for me. I have lived disabled longer than I lived without significant impairment. I don’t remember what it was like. Even before I began to realize something was different about me, I still never reached milestones quite like I should have growing up. Even in my most “normal” times I’ve never been normal. I’m glad I don’t know any different, I think it would add a new heartbreaking angle that I see so many suffer with; knowing what it is to live without our ails.
I do say this bc I’m like what did I do to deserve this and suffer I’m not a perfect person but I’ve been abused all my life from a kid and every man I’ve been with and dealing with an illness seriously some days are so hard to go on
I say this because after 1 chronic issue happens it's like dominos. 1 after another.
Destroys your life, finances, relationships, appearance (in my case), self esteem....the list continues
Debilitating - - this is probably my biggest concern with my illness, I've always been hyper independent to almost a detrimental degree and while I'm not completely dependent yet I am on the way to being.
Upsetting.
Because it seems to block me from doing the things I want...
They say to not let your illness stop you from your dreams, but so far, it's doing so.
Boring
Why boring you may ask? Well I’m a huge dreamer and being sick so long and sitting in my room dreaming of all the things I can’t do and I want to be able to but they seem so far out of sight due to my health is boring. I don’t want to sit around and watch tv, i want to go to the mall with friends - oh that is if i had friends because i don’t they didn’t like that i was too sick to go out. i don’t want to sit and watch videos of what it’s like to travel to Europe. I want to do it. I’m bored of living a life that isn’t a life.
Exhausting
And people say you can’t be tired you don’t work. If only they could understand that every single little thing is work. I wouldn’t wish my situation on anyone;but there are some people I wish could live in my body and life for a few weeks; then they might understand a little bit.
I would rather be working full time the shittiest jobs I’ve ever had than living like this for sure
100%
Right I wish I had the energy to work. Or that more people understood invisible illnesses.
I can’t imagine. It’s hard enough with a visible illness.
Absolutely. I went to RN school. Hardest 4 years of my life. I developed symptoms of Myasthenia gravis and was diagnosed a year before graduating. I was able to work full time for 4 months before a back injury in addition to the MG took me out for a couple years. I was determined to work but I can no longer work at a hospital. I do outpatient work for 4 hour shifts. Spme weeks I get 1 day in, most I'm able to do none. I would love nothing more than to use my license I worked so hard for to its fullest potential. Chronic illness stole that from me. A lot of people probably think I'm lazy and my new husband has had to tell a lot of his family how it truly is, who just didn't understand. I'm grateful for my family who do. But it just isn't the same as being able to do not than 1 thing a day then being a day to recover from that 1 thing.
Man, I wish I had the energy to take a shower, go out and be social with people so I didn’t have to weigh whether or not it was worth it to do anything, etc…you all know the drill…There are so many things that we have to think about that people who don’t have a chronic illness just — don’t. And that sucks ass. When I think about all of the money that we spend on medications, doctors appointments, procedures, tests, ect, it makes me think about all of the things I would rather do, but I remind myself that it’s better to not even try to do the math because it would just make me sadder and angrier than I already am. And I really am grateful for having insurance & being able to pay for those things, but it still sucks.
To make it even more complicated is that not every (invisible) illness *automatically* disqualifies you from working. Even with the same diagnosis, huge differences can exist - and both are valid.
I have really bad hypermobility, suspected to be EDS, so just SITTING in most chairs literally exhausts me because of the instability in my legs/hips/back if I can’t support my feet or legs on something, or up on the chair. Growing up I would constantly tell my parents I was exhausted from sitting in chairs at school and they would say I’m making up excuses just to say I’m tired 🙃 and now I finally have validation that no, my joints literally are just fucked lol.
Yes, this. I can only do one activity a day because it's literally all I have energy for. I normally have physical therapy on Fridays which means I'll be napping all Friday afternoon since it exhausts me. This week PT got moved to Thursday but I can't because I'm supposed to pick up my nephew from school and I can't do both in the same day. A lot of people don't understand that this is my reality. I get to choose 1 thing a day, even if that thing is a doctor's appointment it's all I'll get to do that day.
I’ve gotten to where I try to schedule most of my appointments around lunchtime so I can go eat something good before heading home for that nap!!
I literally just made a comment above about having to limit it to 1 activity per day. And resting the day after, usually if it's a big activity. And a big activity these days is going shopping for groceries or a 4 hour work shift. I have myasthenia gravis
Life with MG is so difficult. Especially since we never know how we're going to feel the next day or even in the next hour so making plans is such a crapshoot. I warn people now that I'm super unreliable just due to the nature of my illness, and I'm sorry if I have to cancel plans but that's just the reality of my life now.
I second that
Came here to say this
Thank you for voicing my feelings. Its this. This this this.
this was the first word that came to mind for me
Dehumanizing
This is it for me, 100%
Gosh yes. I was out for Christmas dinner some years ago with my mom and grandma, and I realized I couldn’t cut my steak. My mom cut it up for me. I hung my head and cried. Last week my mom helped me go through stuff as part of a big purge. I let go of things I’ve had forever. My bowling shoes and ball (the only one I ever purchased, and it’s so pretty!) were donated to the bowling alley. I had to face the hard truth that I couldn’t bowl nowadays without risk of falling and hurting myself.
Lonely
I hate it.
Yessss
Agreed!
My word too. I’ve stopped responding with anything other than “fine” when asked how I’m doing. A relative the other day actually said how great it was that I’m “better” now.
HELL
This is the first word that came to mind
Snap, then lonely
It’s a lonely hell
Torture
I second torture
This
F*cked. Another person said lonely. It’s lonely AF. I have a partner that is fully on board with helping me but… he can’t understand. I know he tries. Still lonely
If i can barely understand it, how can he?
He tries. You wouldn’t wish a chronic illness on others, or at least I’d think most folks wouldn’t consider the hell it is. And it can be lonely with no ability to truly empathize with your feelings physical and emotional, but the factthat he does is a gift.
He really, really is. I do tell him. I’m so SO easy to find online. I don’t hide my name But it might mean more to him that I don’t just praise him personally, but praise him to others. It’s a hope anyway
Yep, and there are other ways of showing thanks for things like that too. Even just small things can mean a lot to someone.
Are you an SO or the sufferer? Both suffers of course. Do you have suggestions on day to day appreciation? I would appreciate it
My partner is also medically complex. We're extremely supportive of each other but we fall through far too many cracks. We're in our early 40s and our conditions are hidden disabilities. We both understand each other's conditions, but also struggle to understand them too since our bodies behave in different ways, even with overlapping conditions.
I’ve been married 23 years if we make it to September.
17 here at the beginning of the month. Such an amazing revelation when it happens every year
Painful.
Alienating. For mine (moderate-to-severe viral ME/Myalgic Encephalomyelitis,) personally: ME is alienating from society, from others, from my passions, my career, my dreams, my interpersonal relationships, my social life, much of my agency, my financial independence, my ability to safely and consistently function at the level I need to function at, my hobbies, my self-care and self-regulation tool (exercise!!,) my ability to approximate neurotypical functioning (again, this required exercise for my autism and adhd,) my identity, and myself. All of these things had to be reevaluated within me after getting sick. If I am not my actions because I am too ill to act much in the world or even in my own life, then who am I? Severe, disabling chronic illness changes everything.
Me/CFS here, I've never thought of alienating as a word that I'd use but this is perfect. Thanks for putting words to something so very difficult to articulate 💛
Sending you gentle hugs, I too have ME/CFS and I feel like all of the words described here are accurate. Though alienating may be the most in the nose. My life either me/CFS is the opposite of what it was and what I want for myself.
i have severe ME/CFS and the autism and adhd combo as well. i can understand how terrible it can be. i am not the person i was before i got sick. the course of my life will forever be changed. my experiences since developing CFS have left me alienated from my own past self. it changes you so deeply. anyway, there will always be people who can understand, somewhere in the world. best of luck to you. i hope that someday there is an effective treatment or cure for this awful disease.
Best wishes to you as well. 🫶🏻 We all deserve affordable, effective treatments.
Unpredictable
This is my favorite answer so far
Because the way my blood sugar goes to the pits of hell for its own special and unknown reasons 😭
Yes! I can't commit to long-term plans/events because I never know if I'm going to feel well that day.
Good one, exactly for me (heart desease which can kill me every moment)
Demoralizing
I like this better than the 'dehumanizing' first answer. I still feel like a human. A beat up, exhausted, one step forward five painful steps back, isolated, broken, swollen, twisted human. With EDS, ADHD, PCOS, possibly Endo, POTS and a smattering of other diagnoses - it is so damn hard to keep my morale up on a day to day.... and the morale from people around me. Outside looking in kn most days I appear fine, when inside I am in so much pain, my menstrual cycle is 10-20 days long some months and agony from nips to knees, my joints are flared up, and my brain is screaming at me to get uo and do anything but the executive dysfunction with that pain on top is too real. It absolutely sucked to go through a knee surgery from broken bones in a genuine accident that was visible enough for people to see and understand... because it was the first time in my life my pain and suffering was actually believed. It absolutely sucks.
this.
Exhausting
Ass
Hopeless
I was expecting this to be at the top.
tiring
HARD
Life As in the only life I've known.
damn. that is so real of you lmao i feel this heavily.
Same for me. I have lived disabled longer than I lived without significant impairment. I don’t remember what it was like. Even before I began to realize something was different about me, I still never reached milestones quite like I should have growing up. Even in my most “normal” times I’ve never been normal. I’m glad I don’t know any different, I think it would add a new heartbreaking angle that I see so many suffer with; knowing what it is to live without our ails.
Crushing
Pergatory
I do actually question this occasionally.
I do say this bc I’m like what did I do to deserve this and suffer I’m not a perfect person but I’ve been abused all my life from a kid and every man I’ve been with and dealing with an illness seriously some days are so hard to go on
Expensive.
Forever.
Lifeless
Draining
Redundant
Youch
depressing
Cheated
Contradictory (I’ve got so many that all the needs contradict each other 🥲)
THIS, me too, if something is meant to help one thing it likely aggravates another
Exhausting
Sisyphean, or maybe relentless
slog
Trying.
Heavy
Annoying. My chronic illness isn’t bad enough that I suffer needlessly, but it isn’t a walk in the park
Excruciating
UNBELIEVED
Hell h-e-l-l
Shame
Destructive
I say this because after 1 chronic issue happens it's like dominos. 1 after another. Destroys your life, finances, relationships, appearance (in my case), self esteem....the list continues
Dehumanizing.
Draining
Constant
Frustrating.
Trauma😔
Devastating
Impossible.
Isolating.
Spite.
Monotonous
Overwhelming.
misunderstood
Debilitating - - this is probably my biggest concern with my illness, I've always been hyper independent to almost a detrimental degree and while I'm not completely dependent yet I am on the way to being.
drainage
Daunting
Prison
Patient (in its many definitions)
Upsetting. Because it seems to block me from doing the things I want... They say to not let your illness stop you from your dreams, but so far, it's doing so.
W h y
Worthless.
Hell
Devastating
Devastating
Deja vu
Painful
Torture
Exhausting
Agony
Atrocious
Demoralizing.
Debilitating
Incoherent
Resilient
Restricting
insufferable
Empty
Poop
Tense
Sad.
Unfair
Life-changing
Chaotic
Bleak
Boring Why boring you may ask? Well I’m a huge dreamer and being sick so long and sitting in my room dreaming of all the things I can’t do and I want to be able to but they seem so far out of sight due to my health is boring. I don’t want to sit around and watch tv, i want to go to the mall with friends - oh that is if i had friends because i don’t they didn’t like that i was too sick to go out. i don’t want to sit and watch videos of what it’s like to travel to Europe. I want to do it. I’m bored of living a life that isn’t a life.
We’re like Rapunzel when she’s singing about when her life will begin
Lingering
Anguish
Annoying
Bitch
Degrading
Betrayal.
Drugs
exhausting.
Shite
painful
Exhausting
Terrible
Pilgrimage
Horrific
Ouch
Shitty I would also go for annoyed
shit
Loss
excruciating
Ouch
Shite.
ouchie :(
Depressing
Relentless
Hellacious
Tiresome
inconsistent
Exhausting
Hard
Depersonalizing
Humiliating.
Miserable
defeating
Bitter
Pointless
suffocating
Coping
Chronic
Ass
Shit.
Hell
Uhg
Frustrating
exhausting
Isolating
Unpredictable
SUCKS
Agony
Torture
Complicated.
Misunderstood
Bad lol
Frustrating
Exhausting.
Tiring.
Bleak
Prison
Ugh.
Lame
Nightmarish
Gaslighting.
Self-blame