Chronic pain onset in early adulthood and grief over h-EDS diagnosis.

TW, for all the usual stuff, but also mentions of SH and suicidal ideation as stated in the tag, as well as body image discussion, grief, and transphobia. Just a really heavy post in general, please do not interact if that will worsen your day.

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I began experiencing chronic pain aged 16. It crept up on me, really, mild discomfort turned into a screaming weight I drag along with me every day. It really disrupted my social life and my academic performance: I used to play drums and sing with a band, I used to go out with friends, run Dungeons and Dragons games, write and create art, I used to be able to walk without crutches and move without joints dislocating and exist without this const

But that’s all gone now.

I waited two years for any kind of diagnosis to explain what had stolen my life from me, and in November I was finally seen by a specialist who diagnosed me with hypermobile Ehlers Danlos syndrome. I could have told them that myself. I was offered no pain relief, and no long term support in the wake of diagnosis, just a list of physical therapy exercises, a single session in the hospital which led to a severe shoulder dislocation and muscle spasm leaving me housebound for a month, and a bill my parents couldn’t afford.

I turned 18 over this summer, and everyone my age is moving on to college and working and driving and gaining some semblance of independence, but I am stuck at home stagnating. I managed to score the 11th highest mark in my graduating class in June, the top 20th percent, securing results in my final state exams that I‘m really happy with– especially considering the hurdles I faced to even take the tests, and the amount of time I was forced to take out of school these past two years– But, I have nothing to gain from it, really.

I decided to take a gap year before college to work, build up some savings, get my driving license, and– most importantly– get my health in order. But there’s not many jobs that will take me, and I am not physically capable of performing the ones that might. I guess I’m just trying to get on disability, what meagre allowance it might offer me that the Irish government is cutting by the day.

I should be doing regiments of physio exercises every day but I can’t find the mental or physical energy to do so, much to my own chagrin and that of my father. I know it kills my family to see me like this. I hate myself for it.

I feel the depression I’ve been battling since age 11 trying to drag me back down. It had its teeth sunk into me for so long, and I have the scars to prove it, but I really had managed to beat it back before all this started. I was doing good, I was doing really good. Chronic pain is stealing that progress from me. I just feel like it’s made me a worse person. I cannot empathise in the same way I once did, I cannot function in the same way, think in the same way, act in the same way. Sometimes I don’t know how my friends even recognise me anymore. I know I don’t look the same physically, my Mam reminded me of that in an argument recently. I used to do boxing. I’ve gained some weight because of the lack of regular exercise now. I know she’s just worried for my health and she’s upset seeing me struggle but, god, it stings. It doesn’t help that they’re so transphobic, and we’ve all been walking on eggshells about my identity for the better part of a decade, and now I’m stuck in the house and I have no way to build up the savings I wanted to have to fund my transition in the future.

My whole life fell apart, and the future I wanted was stolen for me with my diagnosis, and I had to hold that grief off for months to try to finish school and help my loved ones through their own physical and mental health crisises… But now the panic is over, the deadline has passed, the rite of passage completed, and I’m standing (hah, more like lying down) in the wreckage on the other side.

The pain, physical and mental, is overwhelming, and it has nowhere to go. I have nowhere to put it. That old self destructive impulse is begging me to go back to my darkest times– which now feel like their struggle pales in comparison to the tangible issues I have now, not just fighting my own invisible demons– but I won’t. I have that at least, no fucking way I survived all that just to end it now. No matter how tempting it feels on my lonely, agonised, and sleepless nights. So I just sit at the threshold between complete defeat, giving up and laying down to die, and moving forward, actually putting in the effort to improve and heal and build some kind of functional life.

But I can’t bring myself to take a step in either direction. I’m just so tired. I feel like a ghost in my own life, even when surrounded by my beautiful friends and family, even on my happiest days. That boy they knew is gone and I’m only half a man standing in his place, but nobody sees that. They’re still talking to who I used to be, and I don’t know who I am yet.