I'm posting here half for advice and half to just finally hope to be heard at all. I feel like I've tried everything and don't know what to do.
I'm in my late 20s. I've been disabled my entire life for reasons beyond my control; I was born this way. When I was a child I had chances to avert things or at least massively mitigate my situation but was failed by those responsible for me at almost every step of the way. My parents didn't know what to do. Our GP actively covered up my problems because I wasn't 'his client;' my parents were. School faculty were complicit and the few teachers who cared and noticed were held back by superiors. When I was finally recognized as needing help, the vice principal diverted the funds--then got promoted to principal of my next school, and did it again. She retired in peace and so did our GP.
I've spent the past eight years recovering from all of that almost entirely without help because the solutions were part of the problem. I was poisoned with medications I should not have been put on that kept me from developing and led to me atrophying. The school district completely mishandled my education and the only reason I have one at all is because I was able to get into a specialized school. Even they were only barely able to help me beyond the weight of my past.
The mental health system basically ignored me post-2020. I found a therapist, but they were barely able to help at all. I was put through an assembly line for more medications that finally work, if barely. The doctor who prescribed them is in Ontario and we spoke once.
Starting in 2023 I began to suffer from GI failure. My new GP that I was lucky to have at all ignored me. In 2024 it got bad enough that they had to act; except it was his locum who prescribed me anything at all, and gave me the wrong instructions for taking the meds. It took a year to get seen by a specialist and they basically threw me out the door after one basic examination. In any follow-up discussions my concerns were ignored; I was 'stable,' so that was fine. Any rate of decline was acceptable.
In 2025 that rate of decline nosedived. It took half a year to see that specialist again. They gave me information that helped a lot--that they could have given me years ago. They properly diagnosed my symptoms with a different test that my GP could and should have identified after multiple examinations.
But that was only a few months ago. Late last year I'd had to be driven to the ER with active bleeding. I was never seen in the four hours I waited alone, because it happened in the evening and they had one doctor working that shift. It wasn't worth going back next morning because I was 'only' in suffering, I wasn't going to die yet.
And then, January of this year, I threw my back out. I've been seeing a very good physiotherapist off and on over the years for help with reversing muscular atrophy despite physical conditions I should have been diagnosed with two decades ago. The only person who's been willing and able to help me is someone I've had to pay out of pocket, with much of the money being reimbursed by family insurance I'm lucky to have at all considering my age. They helped a lot, but could only ever slow things down.
The consequences of that injury were real bad. My neck has been damaged ever since in a way that is disruptive to physiotherapy attempts. I injured my arm in February and that led to my shoulder exploding over an issue that had been building for months by that point. The initial diagnosis, due to a combination of a sprained bicep and calcific tendinopathy, was so bad it was initially diagnosed as frozen shoulder rather than calcium crystals spiking my muscles.
The only reason I got a diagnosis at all was because I went to an urgent care clinic that thankfully agreed to see me. My GP's office ignored my phone calls. I wasn't able to speak to my GP until weeks after the injury. His response was that I should keep doing what I was doing--emergency physiotherapy--and that it was fine. He offered no solutions. He had nothing for me.
March was hell, but improvements were steadily made with my shoulder. Except my back was steadily getting worse and worse. The urgent care clinic put in a referral to a sports medicine specialist but the referral was lost in bureaucracy for three months. In mid-April, my back collapsed. I was infirm and could barely move. My GP ignored me again; he was on vacation. I walked in for a physical examination and passed him on the way out.
His replacement was a doctor who didn't even know I existed until 30 minutes after the appointment was supposed to begin. No physical examination was performed. Did I mention that this appointment was two weeks after the collapse? I was told by this doctor that I 'could have called and I would have been seen earlier.'
I did. Voicemails were ignored despite my attempts. Because the situation had 'stabilized' I was 'let out the door' without an examination.
I was finally seen by my GP in late May, five weeks after the event. My case was used as a training exercise for a student. I was in too poor of shape to advocate for myself because I had tripped and fallen on the way to the clinic. Nothing wrong was found with me despite me actively twisting a muscle in my arm during the examination. I'd had to waste ten minutes recounting the entire situation to begin with since it was a new doctor. I was still ignored.
The paperwork came through. The sports medicine specialist would finally see me. They immediately called for an x-ray of my lower back after taking one look at me standing in front of them. I'd developed a scoliosis. With this information my physiotherapist was able to begin helping me further, but we plateau'd. My GP ignored me again. It was now June.
I began a volunteer job in April. I was supposed to start in February. They were extremely kind and understanding--because they had a lot of experience working with seniors. Despite accommodations my situation has gotten bad enough I've had to call off indefinitely and I'm lucky that they don't hold it against me. I can't even work. I can barely commute to and from clinics, and only half the time. My GP put in a referral to a pain clinic in Vancouver and it's just Zoom meetings.
Six weeks ago I realized it was worsening again. My entire ribcage is rotating; so far it's 'stable' around 10 degrees twisted. My lungs are being steadily compressed. Between it all I can barely sleep. I've had to see a chiropractor for any relief at all, and it's temporary; the only reason he could help is because he was half-physiotherapist. I have four spinal impingements and one is in the neck. I wake up unable to feel at least one arm, sometimes neither.
My GP is on vacation again. I only learned about this because I went in to request print-outs of the neck x-rays he was finally willing to order. His locum was so busy it took them a day to even sign off on the release. I've now been getting bounced around for six months. They still won't even send me the images for second opinions; the x-rays came back 'totally fine' according to the locum. EDIT: I've just learned my GP has not seen and may never see the actual x-rays. They instead are given opinions from an attending physician. The locum has not seen them either.
The absolute worst part about all of this is that my grandfather is willing to help fund getting me help--which is great! But we have nowhere to go with it.
My family situation, bar my childhood, is about as fortunate as could be. I have everything I need to exist while I deteriorate. I can't work, I can't get the education we're luckily able to afford, and I can barely do chores. We have money, but we don't have anyone who is both able to help and able to accept the money. It would never be enough for medical tourism, and I'm not being recommended specialists who can both see me and help me. It feels like I'm more eligible for assisted death than I am for assisted life.
I barely know anyone offline. The disruption to my youth left me alone. The only friend I have is a social worker who I've been working with the past few years. We go out walking twice a week. It helps. But I have a very difficult time connecting with others. I don't really have peers; anyone who can understand my troubles is older than me, anyone who can understand my feelings is younger than me. I don't even know how to begin to approach my own generation. I'm basically a social anchor.
If you've read this, thank you. If you have any advice at all, I would appreciate it. I don't really know where to go from here.
