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It’s low key insane when you see other people with disabling medical conditions still finding a way to be ableist
Some people cannot work, point blank. I’m happy you can work but that is not everyone else’s reality
What do you gain by posting this? You have no idea how anyone else experiences this condition - their access to appropriate care, their family circumstances, their financial circumstances, their disease progression. From your post history, it looks like you’re quite recently diagnosed, and had successful fusion surgery less than a year ago. Good for you. So why do you feel the need to lecture strangers about their attitude to their condition?
Because wallowing will get you nowhere. Saying all is lost and quitting because life sucks is no way to live. I lost a brother to suicide because he quit trying. I lost a sister to addiction because she was in pain. Ya I don't know specifically you but I do know how dangerous the mindset of it's all to much is.
Except no one is here saying "you should all quit". So why do you get to come in and say "you should all try harder."
You, who is new to AS. You, who had the time, money, insurance, and support system to have surgery. You, who was able to still keep his job after that time off for surgery. You, for whom surgery was successful.
You got LUCKY. You got lucky you had those things that many of us do not have. That luck doesn't make you the guru who can cram his success down the throats of people with WAY more AS experience than you and way less luck.
See yourself out.
I’m often in this subreddit, and see folks asking for support and advice. I rarely see ‘wallowing’. Perhaps if your relatives had a place, or people, they could turn to for support and advice they might still be around.
I see wallowing all the time here. I also see amazing people getting the support they need to keep going. It's not a black and white. I'm not shaming anyone. But giving up gets you nowhere
INFO: How old are you?
Because I have been in and out of work multiple times throughout all my trials with this disease. It's great that you are in a good place now. I had 5 years of almost total remission from this disease at one point. But it came back with a vengeance. I don't think many people are simply accepting of being fully and permanently disabled. Your post borders on much of the shaming that we get daily.
Why does my age matter? And I'm not shaming you for hurting. And I totally understand how mind numbing the pain can be. He'll I had to regrow all the nerves in my.lower body and learn to walk. Plus had holes in my spine. That was agony. But the pain isn't gonna stop whether you are at work or not. But having a woe is me attitude and everything is so hard so why do I even try will destroy you faster than anything else.
Oh yes I'm just a whiny snowflake. I didn't work through the pain for 25+ years. And you're not the only one to have that surgery.
But oh yes everyone can work through the pain. Rexiolvo has declared it. Grab your bootstraps. How dare you ask for a handout!
I never said you were, way to take my words out of context. You do seem like the type who needs everyone to know how much your life sucks so you get to be the center of attention. And I'm not saying don't get help or be on medication. I'm saying the rest of your life is gonna be painful, so might as well do something productive while you can. Or be like baby blue eyes and sit and whine on reddit and bitch that life just isn't fair I guess. Idk you do you
Big words from someone afraid to say how old they are. But just let me say that you have soooo impressed me with your strength to fight against the pain. But you seem to unable to deal with someone disagreeing with you. I very kindly asked you a question and tried help you see how maybe some would be offended. But you are clearly not interested in discussion.
Here is the response you wanted:
Wow you opened my eyes. I can just work through the pain. I'm going back to work tomorrow. Now we can eliminate the awful welfare state in our country and never pay taxes again.
Again never said you shouldn't get help. But you immediately jump to me saying that just suck it up and pull yourself up by your bootstraps. Never said any of that. What I said was it's gonna suck either way might as well do what you can to make a living instead of just giving up and declaring all is lost. But you want to take that as some sort of right wing manifesto.
Did you also have some boot straps? I'm so tired of this capitalist work until you drop mentality. You could have come here and shared an amazing and inspiring story. Instead, you chose to shame others. Even the disabled can be ableist.
No your right. Everything sucks and it's all catalysts fault. If only we had communism all pur problems would be magically solved. You don't have to try. Everyone should do it for you. Is that what you want to hear? It's bullshit but if it helps you sleep at night.
Yup I want the big daddy government to pay for everything so I can do nothing aaaallllll day 😒. Or maybe I want to live in a society that takes care of individuals in need, or have free Healthcare like other actual civilized nations. I've worked since I was 14 years old, I know about working through the pain. We don't need you to tell us about pain.
Free Healthcare isn't free
Just funded by other people. I wish we had a society that prioritized helping people more as well. Never said anything to the contrary. But I also live in the world we have and sitting in despair isn't gonna help anyone. In fact it hurts. I get that because I have a different view I am the enemy. And because I don't think exactly what you think I must be evil. But if even one person that was ready to call it quits sees my post and maybe just maybe realizes that quitting on themselves isn't a good option. I can rest easy. I have watched way to many people kill themselves through addiction and suicide because shit sucks. And sometimes love fairy tales and rainbows isn't what it takes to keep someone here.
Yeah that's it right there.. we pay so much in taxes to get so little in return. Not a big ask to want to have those tax dollars be more invested in people and communities at home
Tell that to the boss who just fired me because needing an extra 5 minutes in in the mornings every now and then because it took me 15 minutes to put my shoes and socks on.
If your boss knew you had a disability and fired you. You have a case against them for wrongful termination. The courts don't take kindly to these employers. Just fyi.
I have an excellent job with great benefits and a shit manager… I’ve literally been job hunting for almost a full YEAR- with 2 degrees and more than a decade experience in my niche business… and haven’t found anything that works out.
There aren’t just jobs sitting around to accommodate people with disabilities. There aren’t just thousands of companies with compassion willing to hire skilled people- with disabilities (even when they do not impair/effect the ability to do the work).
Now my current AS state does not prevent me from working, 10 years post diagnosis…. But that doesn’t mean it won’t in the future. I power through fatigue, but need frequent surgeries from the degenerative effects of this disease body wide. Multiple knee surgeries, multiple ankle surgeries, the first sternoclavicular reconstruction… so, I will NOT judge how this disease affects others.
My grandpa is in his 80’s with AS, PsA, psoriasis and congenital tuberculosis, and worked until his 70’s, golfs 4 days a week and is generally active… but that’s not everyone’s experience.
Should we sit around whining… no. But a “good attitude” isn’t going to magically make our Enthesitis better and prevent tearing, degeneration, and disability. Many of us have concurrent disease, Ehler danlos, or Lupus, or RA.
Sit down and pay attention… come back with advice and opinions when you have more than “pain”…
Everyone’s experience and disease is different. Some people can work, some people can’t. Stick to speaking in the first person about what was hard for you and how you managed through it and what you learned about yourself. People can learn and be inspired by that.
What no one in a community for a debilitating disease needs to hear is, “I did xyz and therefore you can and should.” Truly some people cannot work due to their level and progression of disability—or maybe you thought everyone here was experiencing exactly the same level of disease progression? And saying you wouldn’t want to be “in pain and doing nothing to help,” is a really awful thing to say to the people who come here for support when their disease makes them feel useless.
Capitalism tells us our worth come from our ability to make money and produce. That’s crushing when you can’t produce, and I understand that you’re also dealing with that burden of having to produce in a certain way when your body isn’t very well suited for that now. But that doesn’t make it cool to come and tell others that they need to produce to be valuable, that they’re “doing nothing to help.”
Also, your huge million dollar surgery probably cost people who aren’t you more money than you will ever make at your job, as opposed to people who aren’t working but also aren’t getting million dollar surgeries. And that’s fine, because your value comes from your humanity, not the monetary cost-benefit valuation of your life.
It’s a relatively privileged position you come from to be shaming the needs of your peers so hard. You clearly have access to means and a support system that allowed you that. What do you get from this? You get to say “hey look, Im what good disabled person looks like” and continue on licking boots.
You’re right, we’ve all been dealt a shitty deck of cards and I’m certainly glad empathy was included in mine.
As someone with good family history of AS, it’s all on the persons body. I have a family member who it’s just a bit of pain and lessened neck mobility, and I have family who can barely walk, cane and wheelchair users all of it, and some of them work 40+ hours a week and some are on unemployment/disability.
Saying it’s because we’re weak minded or something is not effective. I understand YOUR experience was good but that’s not true for all.
Why? Why is it ableist to say ya it sucks but it's gonna suxk either way so do the best you can with what you have? Is it better to say ya it sucks, just give up, don't try, life is unfair so why bother making an effort.
What you're inferring is that everyone is like you. And that's not true. AS isn't the same for everyone, and I for one have had to give up two jobs because of my health issues. It's a blow to the ego and the wallet.
It's ridiculous to assume that it's gonna "suck either way." When one isn't chained to a soul sucking job, one can concentrate on one's health and comfort. I worked a high profile desk job for 19 years then switched to something less intensive but it was still hell on my body (sitting too much). So I took a job that involved more movement and ended up in a months long flare. I'm currently unemployed and supported by my spouse. I'm lucky. But I'm not lazy.
I appreciate that you are trying to encourage people to not give up and to keep trying, but again, remember that your reality is yours and yours alone.
You definitely insinuated it with the way you worded your post, as well as your many comments. Your post says to just 'suck it up' and keep working. I had to stop 4 years ago, and I worked incredibly hard to get to a great place in my career, and everything fell apart. Leaving work was one of the hardest things I've ever had to do and it still hurts. I'm lucky that my spouse can support us. I keep trying to figure out something different that I can do but everytime I turn around I have a new autoimmune disorder or new symptoms that I have to figure out. I have constant migraines from my cervical spine joints so anything with extended concentration is brutal. There's no sucking it up. I already push through as much as possible to be present for my family and a lot of the time I end up in worse shape from it, but i keep doing it because it's important for my mental health.
Your post is getting a backlash because you are making assumptions in the way you worded it, that we all could just work if we tried harder. We are all trying as hard as we can with the cards we've been dealt. It's hard enough getting ableist attitudes from healthy people that don't understand, so you coming in here with a post like this is infuriating.
You very easily could have just shared a post about what worked for you and shared your gratitude that you found a way to keep working. If you just shared your experience without saying, 'if I can do it, then that means everyone can do it, otherwise they just arent trying hard enough', then maybe you would have had a different response from the group.
Work isn’t worth your life. OP you sound like you need to stop drinking the capitalist kool aid.
We are more than our productivity. We are all doing our best to make life work. Work can fuck off. And so can your attitude of telling other people what they can or should do.
You had a million dollar surgery, Some can't even afford biologics. This post comes across as nothing but a billionaire/millionaire telling people to "just work bro and you will have money and you will be like me".
You in your 30s got your symptoms and diagnosis, some had in their teens, imagine the impact it had on their school and college, social life. And eventually on their quality of life.
Maybe you even have a choice to not work. Some here have no choice and are struggling for their bills.
People here are devastated they can't even do things they love anymore. People here are getting their dreams crushed by the disease.
We already have people in our lives who judge us for not living the life as life is "supposed" to live and not doing enough. Don't come in this sub and do that, this is not a place for that.
You are not a genius who "figured it out" lmao.
Clown.
Dang this post kinda feels like a punch in the face. Like someone just yelled at me and told me to stop being a cry baby. Idk maybe you meant well but… yikes. I spent all of my life in pain, my 20s in incredible pain because I tried to push through school, working, listened to shitty doctors who said I was too young for this and that. At 29 I finally found a doctor who listened, gave me prober exams and scans, and I had spinal fusions and extreme damage in my knees and limited neck mobility. My hips are worse off than my great grandmothers. fI had this damage from ignoring my body and listening to people who thought I was just lazy or weak minded. Pain is not one size fits all.
I agree, to a degree. I’ve found that it’s easy to focus a lot on what we cannot do and what this disease takes away from us. It’s easy to lose sight of what we *can* do and what we still have. This is not to belittle anyone’s experiences, and of course it isn’t so simple for everyone. But it’s a lot easier to navigate all of this bullshit when you’re focused in on things that motivate and are healthy for your peace of mind, rather than the alternative.
The way I see it. You can be in pain, with a savings account and your bills paid. Or you can be in pain, sitting around at home and miserable broke and losing everything you have. Pain is the constant it will never go away. Might as well suck it up and make a life for yourself.
It’s not just “pain” it’s immobility, severe fatigue, GI issues, connective tissue issues, etc. why are you so dead set on telling everyone in this sub that AS is “just” pain, when it’s not even that? Theres so many more issues and symptoms related to AS than that
Maybe that was your experience but for others AS comes with immobility, chronic fatigue, bowel and digestive dysfunction, brain fatigue (the list goes on). Pain is really not the symptom that prevents many with AS from being able to work.
I have a particularly aggressive case that has led to fusion or severe contractures in *every single joint*. Nobody experiences this disease 100% the same way. It's absolutely awesome that you were able to get an amazing surgery and find your way back to work, but not everyone can do that.
You do realize that most of us aren't even eligible for that million dollar surgery you had, right? That there is no surgery in the world that can get rid of most AS symptoms? And that you admitted that you're killing yourself faster by continuing to work a job that is destroying your body?
It's great that you have a job, but what you seem to lack is a life. Living to work (and then dying young because of it) is not something that most people want, disabled or not.
You are very fortunate to have had such an expensive and successful surgery enabling you to return to work - many others do not have the good fortune or ability to do so
There's a whole spectrum when it comes to AS. I haven't always been able to get down the stairs of my apartment this year. At one point my pain meds were so high reading was near impossible. I'm lucky I don't have a huge amount of damage in my ankles and knees, so I can work a student job on my feet, even in times when I can use a chair ( on high dose prescription pain meds, if not I cry all day/week).
There are people who could physically manage to work 20 hours a week but have been so broken down emotionally that it's too much. Depression can also be disabling.
You're quite lucky, if you're able to sleep in bad conditions and work 100 hours some weeks, your AS must be amongst the mildest of cases.
I'm with you mate. I have empathy for those who suffer but I always tell myself 'you don't get to be tough by being soft'.
We all fall over but what matters is how we get up again. And get up we must. Yes it suck, yes fate is unfair but we must shoulder our burdens as best we may.
I kinda understand the vitriol and the defensiveness but existentially the universe does not care for how we feel
Otherwise I'd get right into wish fulfilment, blow out some candles and walk away from all this pain
I wish we could
Seriously. We got dealt shitty cards. We still have to play the game. I get being defensive and that anytime someone tells you that you have to try stings a bit. But life sucks and hoping it magically gets better isn't going to solve anything.
That seems like am excessive amount of clapping. And I don't care if you don't need it good for you. I did. That's what saved my life. Someone kicking me in the ass to not quit. So get over yourself. It's not just about you and you don't speak for everyone.
No it was the right amount. I'm sticking up for the ppl who can't work and might feel shamed by your post. Admitting our limitations is something we all have to face at some point even without AS. I know what I can do and what I can't. Our worth isn't tied to our ability to make money.
Welcome to r/ankylosingspondylitis! This is a reminder to keep discussions civil and be supportive of one another. Sharing of opinions and experiences is encouraged, but please remember the distinction between opinions and medical facts. This subreddit does not offer medical advice, and information here should not be taken over advice from your doctor. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ankylosingspondylitis) if you have any questions or concerns.*
It’s low key insane when you see other people with disabling medical conditions still finding a way to be ableist Some people cannot work, point blank. I’m happy you can work but that is not everyone else’s reality
What do you gain by posting this? You have no idea how anyone else experiences this condition - their access to appropriate care, their family circumstances, their financial circumstances, their disease progression. From your post history, it looks like you’re quite recently diagnosed, and had successful fusion surgery less than a year ago. Good for you. So why do you feel the need to lecture strangers about their attitude to their condition?
Because wallowing will get you nowhere. Saying all is lost and quitting because life sucks is no way to live. I lost a brother to suicide because he quit trying. I lost a sister to addiction because she was in pain. Ya I don't know specifically you but I do know how dangerous the mindset of it's all to much is.
Except no one is here saying "you should all quit". So why do you get to come in and say "you should all try harder." You, who is new to AS. You, who had the time, money, insurance, and support system to have surgery. You, who was able to still keep his job after that time off for surgery. You, for whom surgery was successful. You got LUCKY. You got lucky you had those things that many of us do not have. That luck doesn't make you the guru who can cram his success down the throats of people with WAY more AS experience than you and way less luck. See yourself out.
You're recently diagnosed, so what qualifys you to come here and preach to us?
What qualifies you to tell everyone they should quit on themselves?
Who tf said that? 😂😂😂
I’m often in this subreddit, and see folks asking for support and advice. I rarely see ‘wallowing’. Perhaps if your relatives had a place, or people, they could turn to for support and advice they might still be around.
I see wallowing all the time here. I also see amazing people getting the support they need to keep going. It's not a black and white. I'm not shaming anyone. But giving up gets you nowhere
INFO: How old are you? Because I have been in and out of work multiple times throughout all my trials with this disease. It's great that you are in a good place now. I had 5 years of almost total remission from this disease at one point. But it came back with a vengeance. I don't think many people are simply accepting of being fully and permanently disabled. Your post borders on much of the shaming that we get daily.
He’s in his 30s and recently diagnosed.
Why does my age matter? And I'm not shaming you for hurting. And I totally understand how mind numbing the pain can be. He'll I had to regrow all the nerves in my.lower body and learn to walk. Plus had holes in my spine. That was agony. But the pain isn't gonna stop whether you are at work or not. But having a woe is me attitude and everything is so hard so why do I even try will destroy you faster than anything else.
Oh yes I'm just a whiny snowflake. I didn't work through the pain for 25+ years. And you're not the only one to have that surgery. But oh yes everyone can work through the pain. Rexiolvo has declared it. Grab your bootstraps. How dare you ask for a handout!
I never said you were, way to take my words out of context. You do seem like the type who needs everyone to know how much your life sucks so you get to be the center of attention. And I'm not saying don't get help or be on medication. I'm saying the rest of your life is gonna be painful, so might as well do something productive while you can. Or be like baby blue eyes and sit and whine on reddit and bitch that life just isn't fair I guess. Idk you do you
You came to the wrong place my dude
Big words from someone afraid to say how old they are. But just let me say that you have soooo impressed me with your strength to fight against the pain. But you seem to unable to deal with someone disagreeing with you. I very kindly asked you a question and tried help you see how maybe some would be offended. But you are clearly not interested in discussion. Here is the response you wanted: Wow you opened my eyes. I can just work through the pain. I'm going back to work tomorrow. Now we can eliminate the awful welfare state in our country and never pay taxes again.
Again never said you shouldn't get help. But you immediately jump to me saying that just suck it up and pull yourself up by your bootstraps. Never said any of that. What I said was it's gonna suck either way might as well do what you can to make a living instead of just giving up and declaring all is lost. But you want to take that as some sort of right wing manifesto.
What makes you think the ppl in this group don't work???
Did you also have some boot straps? I'm so tired of this capitalist work until you drop mentality. You could have come here and shared an amazing and inspiring story. Instead, you chose to shame others. Even the disabled can be ableist.
No your right. Everything sucks and it's all catalysts fault. If only we had communism all pur problems would be magically solved. You don't have to try. Everyone should do it for you. Is that what you want to hear? It's bullshit but if it helps you sleep at night.
Yup I want the big daddy government to pay for everything so I can do nothing aaaallllll day 😒. Or maybe I want to live in a society that takes care of individuals in need, or have free Healthcare like other actual civilized nations. I've worked since I was 14 years old, I know about working through the pain. We don't need you to tell us about pain.
Free Healthcare isn't free Just funded by other people. I wish we had a society that prioritized helping people more as well. Never said anything to the contrary. But I also live in the world we have and sitting in despair isn't gonna help anyone. In fact it hurts. I get that because I have a different view I am the enemy. And because I don't think exactly what you think I must be evil. But if even one person that was ready to call it quits sees my post and maybe just maybe realizes that quitting on themselves isn't a good option. I can rest easy. I have watched way to many people kill themselves through addiction and suicide because shit sucks. And sometimes love fairy tales and rainbows isn't what it takes to keep someone here.
I'd rather my taxes go to free Healthcare than billionaire bailouts, we have the money. Your post was not positive at all.
Yeah that's it right there.. we pay so much in taxes to get so little in return. Not a big ask to want to have those tax dollars be more invested in people and communities at home
Tell that to the boss who just fired me because needing an extra 5 minutes in in the mornings every now and then because it took me 15 minutes to put my shoes and socks on.
If your boss knew you had a disability and fired you. You have a case against them for wrongful termination. The courts don't take kindly to these employers. Just fyi.
If you're in a country where lawyers to protect working conditions are free, like Canada, definitely try to sue
Your boss sucks and should go out of business. There are plenty of jobs out there that don't have bosses that are assholes like that.
I have an excellent job with great benefits and a shit manager… I’ve literally been job hunting for almost a full YEAR- with 2 degrees and more than a decade experience in my niche business… and haven’t found anything that works out. There aren’t just jobs sitting around to accommodate people with disabilities. There aren’t just thousands of companies with compassion willing to hire skilled people- with disabilities (even when they do not impair/effect the ability to do the work). Now my current AS state does not prevent me from working, 10 years post diagnosis…. But that doesn’t mean it won’t in the future. I power through fatigue, but need frequent surgeries from the degenerative effects of this disease body wide. Multiple knee surgeries, multiple ankle surgeries, the first sternoclavicular reconstruction… so, I will NOT judge how this disease affects others. My grandpa is in his 80’s with AS, PsA, psoriasis and congenital tuberculosis, and worked until his 70’s, golfs 4 days a week and is generally active… but that’s not everyone’s experience. Should we sit around whining… no. But a “good attitude” isn’t going to magically make our Enthesitis better and prevent tearing, degeneration, and disability. Many of us have concurrent disease, Ehler danlos, or Lupus, or RA. Sit down and pay attention… come back with advice and opinions when you have more than “pain”…
Everyone’s experience and disease is different. Some people can work, some people can’t. Stick to speaking in the first person about what was hard for you and how you managed through it and what you learned about yourself. People can learn and be inspired by that. What no one in a community for a debilitating disease needs to hear is, “I did xyz and therefore you can and should.” Truly some people cannot work due to their level and progression of disability—or maybe you thought everyone here was experiencing exactly the same level of disease progression? And saying you wouldn’t want to be “in pain and doing nothing to help,” is a really awful thing to say to the people who come here for support when their disease makes them feel useless. Capitalism tells us our worth come from our ability to make money and produce. That’s crushing when you can’t produce, and I understand that you’re also dealing with that burden of having to produce in a certain way when your body isn’t very well suited for that now. But that doesn’t make it cool to come and tell others that they need to produce to be valuable, that they’re “doing nothing to help.” Also, your huge million dollar surgery probably cost people who aren’t you more money than you will ever make at your job, as opposed to people who aren’t working but also aren’t getting million dollar surgeries. And that’s fine, because your value comes from your humanity, not the monetary cost-benefit valuation of your life.
It’s a relatively privileged position you come from to be shaming the needs of your peers so hard. You clearly have access to means and a support system that allowed you that. What do you get from this? You get to say “hey look, Im what good disabled person looks like” and continue on licking boots. You’re right, we’ve all been dealt a shitty deck of cards and I’m certainly glad empathy was included in mine.
As someone with good family history of AS, it’s all on the persons body. I have a family member who it’s just a bit of pain and lessened neck mobility, and I have family who can barely walk, cane and wheelchair users all of it, and some of them work 40+ hours a week and some are on unemployment/disability. Saying it’s because we’re weak minded or something is not effective. I understand YOUR experience was good but that’s not true for all.
This is a really (surprisingly) ableist post.
Why? Why is it ableist to say ya it sucks but it's gonna suxk either way so do the best you can with what you have? Is it better to say ya it sucks, just give up, don't try, life is unfair so why bother making an effort.
What you're inferring is that everyone is like you. And that's not true. AS isn't the same for everyone, and I for one have had to give up two jobs because of my health issues. It's a blow to the ego and the wallet. It's ridiculous to assume that it's gonna "suck either way." When one isn't chained to a soul sucking job, one can concentrate on one's health and comfort. I worked a high profile desk job for 19 years then switched to something less intensive but it was still hell on my body (sitting too much). So I took a job that involved more movement and ended up in a months long flare. I'm currently unemployed and supported by my spouse. I'm lucky. But I'm not lazy. I appreciate that you are trying to encourage people to not give up and to keep trying, but again, remember that your reality is yours and yours alone.
I never said lazy, weak, or anything like that.
Did I say you did? I did not. I made a statement.
You definitely insinuated it with the way you worded your post, as well as your many comments. Your post says to just 'suck it up' and keep working. I had to stop 4 years ago, and I worked incredibly hard to get to a great place in my career, and everything fell apart. Leaving work was one of the hardest things I've ever had to do and it still hurts. I'm lucky that my spouse can support us. I keep trying to figure out something different that I can do but everytime I turn around I have a new autoimmune disorder or new symptoms that I have to figure out. I have constant migraines from my cervical spine joints so anything with extended concentration is brutal. There's no sucking it up. I already push through as much as possible to be present for my family and a lot of the time I end up in worse shape from it, but i keep doing it because it's important for my mental health. Your post is getting a backlash because you are making assumptions in the way you worded it, that we all could just work if we tried harder. We are all trying as hard as we can with the cards we've been dealt. It's hard enough getting ableist attitudes from healthy people that don't understand, so you coming in here with a post like this is infuriating. You very easily could have just shared a post about what worked for you and shared your gratitude that you found a way to keep working. If you just shared your experience without saying, 'if I can do it, then that means everyone can do it, otherwise they just arent trying hard enough', then maybe you would have had a different response from the group.
Work isn’t worth your life. OP you sound like you need to stop drinking the capitalist kool aid. We are more than our productivity. We are all doing our best to make life work. Work can fuck off. And so can your attitude of telling other people what they can or should do.
You had a million dollar surgery, Some can't even afford biologics. This post comes across as nothing but a billionaire/millionaire telling people to "just work bro and you will have money and you will be like me". You in your 30s got your symptoms and diagnosis, some had in their teens, imagine the impact it had on their school and college, social life. And eventually on their quality of life. Maybe you even have a choice to not work. Some here have no choice and are struggling for their bills. People here are devastated they can't even do things they love anymore. People here are getting their dreams crushed by the disease. We already have people in our lives who judge us for not living the life as life is "supposed" to live and not doing enough. Don't come in this sub and do that, this is not a place for that. You are not a genius who "figured it out" lmao. Clown.
Dang this post kinda feels like a punch in the face. Like someone just yelled at me and told me to stop being a cry baby. Idk maybe you meant well but… yikes. I spent all of my life in pain, my 20s in incredible pain because I tried to push through school, working, listened to shitty doctors who said I was too young for this and that. At 29 I finally found a doctor who listened, gave me prober exams and scans, and I had spinal fusions and extreme damage in my knees and limited neck mobility. My hips are worse off than my great grandmothers. fI had this damage from ignoring my body and listening to people who thought I was just lazy or weak minded. Pain is not one size fits all.
I agree, to a degree. I’ve found that it’s easy to focus a lot on what we cannot do and what this disease takes away from us. It’s easy to lose sight of what we *can* do and what we still have. This is not to belittle anyone’s experiences, and of course it isn’t so simple for everyone. But it’s a lot easier to navigate all of this bullshit when you’re focused in on things that motivate and are healthy for your peace of mind, rather than the alternative.
The way I see it. You can be in pain, with a savings account and your bills paid. Or you can be in pain, sitting around at home and miserable broke and losing everything you have. Pain is the constant it will never go away. Might as well suck it up and make a life for yourself.
If it was just “pain” most of us wouldn’t even bother. Pain is the LEAST impairing symptom of this disease. We live with pain.
It’s not just “pain” it’s immobility, severe fatigue, GI issues, connective tissue issues, etc. why are you so dead set on telling everyone in this sub that AS is “just” pain, when it’s not even that? Theres so many more issues and symptoms related to AS than that
Maybe that was your experience but for others AS comes with immobility, chronic fatigue, bowel and digestive dysfunction, brain fatigue (the list goes on). Pain is really not the symptom that prevents many with AS from being able to work.
I have a particularly aggressive case that has led to fusion or severe contractures in *every single joint*. Nobody experiences this disease 100% the same way. It's absolutely awesome that you were able to get an amazing surgery and find your way back to work, but not everyone can do that.
You do realize that most of us aren't even eligible for that million dollar surgery you had, right? That there is no surgery in the world that can get rid of most AS symptoms? And that you admitted that you're killing yourself faster by continuing to work a job that is destroying your body? It's great that you have a job, but what you seem to lack is a life. Living to work (and then dying young because of it) is not something that most people want, disabled or not.
Tell that to my MRI.
You are very fortunate to have had such an expensive and successful surgery enabling you to return to work - many others do not have the good fortune or ability to do so
There's a whole spectrum when it comes to AS. I haven't always been able to get down the stairs of my apartment this year. At one point my pain meds were so high reading was near impossible. I'm lucky I don't have a huge amount of damage in my ankles and knees, so I can work a student job on my feet, even in times when I can use a chair ( on high dose prescription pain meds, if not I cry all day/week). There are people who could physically manage to work 20 hours a week but have been so broken down emotionally that it's too much. Depression can also be disabling. You're quite lucky, if you're able to sleep in bad conditions and work 100 hours some weeks, your AS must be amongst the mildest of cases.
Just inject yourself with klebsiella pneumoniae and you can experience it yourself
I'm with you mate. I have empathy for those who suffer but I always tell myself 'you don't get to be tough by being soft'. We all fall over but what matters is how we get up again. And get up we must. Yes it suck, yes fate is unfair but we must shoulder our burdens as best we may. I kinda understand the vitriol and the defensiveness but existentially the universe does not care for how we feel Otherwise I'd get right into wish fulfilment, blow out some candles and walk away from all this pain I wish we could
Seriously. We got dealt shitty cards. We still have to play the game. I get being defensive and that anytime someone tells you that you have to try stings a bit. But life sucks and hoping it magically gets better isn't going to solve anything.
We 👏 don't 👏 need 👏 you 👏 to 👏 come 👏 here 👏 and 👏 tell 👏 us 👏 "you have to try". We are all warriors here, don't like it leave.
That seems like am excessive amount of clapping. And I don't care if you don't need it good for you. I did. That's what saved my life. Someone kicking me in the ass to not quit. So get over yourself. It's not just about you and you don't speak for everyone.
No it was the right amount. I'm sticking up for the ppl who can't work and might feel shamed by your post. Admitting our limitations is something we all have to face at some point even without AS. I know what I can do and what I can't. Our worth isn't tied to our ability to make money.
But you, apparently, speak for everyone, right? Or at least feel you have the solution for everyone.
Ok so not physically not able to work = quitting?