I'm 24. I think I've had fibro at least developing since i was 14 - lots of time lost to pain brought on by stress. The symptoms only got worse until I was diagnosed at 19. even though it's a diagnosis of exclusion, and my family's reaction ranged from doubt to mockery, i looked for everything I could find about it online and felt so relieved how much sense it all made, how much it all fit. I feel this way especially when I see theories and preliminary findings that fibro may primarily be a problem with pain processing, and those signals being multiplied - that's what I experience every single day. It matches my understanding of what happens in my body.
But despite all of this, at least nine out of ten medical professionals I see for anything either know nothing about it or don't seem to believe it. Every time I move somewhere new and tell them my history they want to put me through every possible test over again. They tell me I'm young and healthy even though I've spent the majority of my life locked in a malfunctioning body. They drag their feet on doing anything to help me - paperwork for food stamps work exemption, and especially disability. Disability is a dirty word to them. The way they talk you'd think I'm asking for euthenasia. I've tried working so much. my symptoms were very light at 14 and that was the only time I've been able to hold a job - and that job made me cry every day from pain. Made me not be able to sleep. It even messed my back up so bad I had to go to a chiropractor at 16 for a year. I spent my days absent in my mind, unaware of my surroundings, shambling around in an aching body and just wishing for it to be over.
I've tried a few other jobs over the years and each time had to quit after two to three days. There was one single job that I held down for a few months, and that's because it was a student job with no requirements, that I didn't interview or even apply for, that was just making a couple wordpress webpages a week, and spending the rest of the time on my laptop, eating, or napping in the back room. And I think because that's in my history and I'm upfront about it, everyone thinks I can work. Even though that situation is in no way duplicable.
I've applied for disability twice now. This last time I put a lot of effort in, got as many resources and forms and evidence as possible, and was still turned down. One of the forms - something I was explicitly told to get - was a functional physical capacity test, which isn't relevant to my difficulties, probably didn't help, and that my doctor has now used to mark that I can work with restrictions on my food stamps reapplication. So they'll probably be sending me to work next month, and if i can't do it they'll take me off.
And I'm so tired of all this fighting to be recognized and given the means I need to live a decent life, andmy therapist advised me to take a break and try a different approach, so I've been doing physical therapy, I've been looking into a disability job placement program (if anywhere can duplicate the wordpress job I guess it'd be them)... I was excited about the physical therapy opportunity, but medicaid only gave me a few weeks of it and all it seemed to do is make it a little easier to push the boulder up the hill. At the end of the day, the boulder's still there, and it's coming back down. And there's nothing I can do about that.
And now I'm tired of all of this, too. Especially since no matter what I'm trying, every step of it takes months of waiting, and trying to figure out how to exist in the meanwhile. Taking care of myself is already a demanding job, and that includes finding ways to spend time that don't drive me insane, and working on all these other things is even more on top of that, and it feels like there's no goddamn end, and there's nothing I can do but wait and hope maybe next time someone will understand.
Anyway if these job things don't work out, I'm doing disability again, and this time with a lawyer. Though I'm not looking forward to that. Everyone I've ever tried to get to help me, with maybe one or two exceptions, has just ended up making me feel worse and/or the situation worse. and by god I just want to be a person. I have things I want to do and work towards and experience but I'm trapped in a body that's incompatible with the system in my country and I feel so empty. I have my whole life ahead of me and I look forward with dread because of it. Because it'll just be more of this.
But despite all of this, at least nine out of ten medical professionals I see for anything either know nothing about it or don't seem to believe it. Every time I move somewhere new and tell them my history they want to put me through every possible test over again. They tell me I'm young and healthy even though I've spent the majority of my life locked in a malfunctioning body. They drag their feet on doing anything to help me - paperwork for food stamps work exemption, and especially disability. Disability is a dirty word to them. The way they talk you'd think I'm asking for euthenasia. I've tried working so much. my symptoms were very light at 14 and that was the only time I've been able to hold a job - and that job made me cry every day from pain. Made me not be able to sleep. It even messed my back up so bad I had to go to a chiropractor at 16 for a year. I spent my days absent in my mind, unaware of my surroundings, shambling around in an aching body and just wishing for it to be over.
I've tried a few other jobs over the years and each time had to quit after two to three days. There was one single job that I held down for a few months, and that's because it was a student job with no requirements, that I didn't interview or even apply for, that was just making a couple wordpress webpages a week, and spending the rest of the time on my laptop, eating, or napping in the back room. And I think because that's in my history and I'm upfront about it, everyone thinks I can work. Even though that situation is in no way duplicable.
I've applied for disability twice now. This last time I put a lot of effort in, got as many resources and forms and evidence as possible, and was still turned down. One of the forms - something I was explicitly told to get - was a functional physical capacity test, which isn't relevant to my difficulties, probably didn't help, and that my doctor has now used to mark that I can work with restrictions on my food stamps reapplication. So they'll probably be sending me to work next month, and if i can't do it they'll take me off.
And I'm so tired of all this fighting to be recognized and given the means I need to live a decent life, andmy therapist advised me to take a break and try a different approach, so I've been doing physical therapy, I've been looking into a disability job placement program (if anywhere can duplicate the wordpress job I guess it'd be them)... I was excited about the physical therapy opportunity, but medicaid only gave me a few weeks of it and all it seemed to do is make it a little easier to push the boulder up the hill. At the end of the day, the boulder's still there, and it's coming back down. And there's nothing I can do about that.
And now I'm tired of all of this, too. Especially since no matter what I'm trying, every step of it takes months of waiting, and trying to figure out how to exist in the meanwhile. Taking care of myself is already a demanding job, and that includes finding ways to spend time that don't drive me insane, and working on all these other things is even more on top of that, and it feels like there's no goddamn end, and there's nothing I can do but wait and hope maybe next time someone will understand.
Anyway if these job things don't work out, I'm doing disability again, and this time with a lawyer. Though I'm not looking forward to that. Everyone I've ever tried to get to help me, with maybe one or two exceptions, has just ended up making me feel worse and/or the situation worse. and by god I just want to be a person. I have things I want to do and work towards and experience but I'm trapped in a body that's incompatible with the system in my country and I feel so empty. I have my whole life ahead of me and I look forward with dread because of it. Because it'll just be more of this.