u/Logical_Edge_4293

How do you live with SCD as an adult? I'm expected to be independent as a 21M turning 22 soon but life sucks. I had dreams of living a normal life in highschool, but I couldn't because my parents decided to send me to boarding school with SCD and, AVN which they refused to acknowledge that I had it or do something about it even after being diagnosed, and all I ever did was try to study and survive yet I kept getting sick. Times like that I wished the suicide attempt worked after my mom beat me up and called me gay even though I was sick and had back pain.

But I had hope that if I manage to finish highschool and get to uni I might live a normal life, I don't even know why I tried. I got into a good uni but my AVN is worse now, missed classes because I was sick or too lazy to go to uni. My grades were shit and even worse I missed my second year end of semester exams and I had to defer, if only to avoid my bad grades being permanent. But I feel so tired of it all. I don't even want to go back. The limping from dead hip joint, the anxiety I get from just walking to get something to eat and the constant fear of being sick and depending on my family just reminds me how weak I am.

I know there are people out there maybe having worse situations than mine but I just feel tired of it all. All I do nowadays is distract myself with coding and gaming, the only things I enjoy and might regret losing them when I eventually die from a stroke which is likely to happen due to the crisis which left my lower lip numb only being told it will be over for the last two years. I'm just ranting now.

Anyway, how can I manage scd in adulthood?

I (21M) have AVN on my left hip and afraid that it's also affecting my right hip. It was probably caused by a sickle cell crisis I had at that time and was diagnosed by my dad as a "bacterial infection". I've had it since 9 years ago, limping now and didn't get the right medical attention when it first started and it's currently at it's late stage because the first consultation I had was from a rushing doctor who basically said it's dead and needed a hip replacement and my late mom who decided that I'm too young to use a crutch. It's gotten so bad, it became unbearable to walk let alone go back and forth to uni and it didn't get any easier with scd affecting my academic life. It's a miracle I got this far.

I tried consulting an orthopedist recently on what I can do and he basically said, "You're too young to get the surgery and there's a waiting list made by others and we'll have to keep monitoring. 9 yrs of my life so I can actually look for help myself and only to be told that I can't. I had to take a deferment because it got harder to wake up and torture myself in the name of going to a good uni, the limping also didn't help because people randomly call me a degrading name for someone with a disability and all I do now is laze about all day, trying to convince myself learning software development will help me get a job and be independent. I can't control how my parents mismanaged my condition but there has to be something I can do. I'm tired of feeling pain and I don't want to have more pain to deal with cause I don't think I'm in the right state mentally for more of it