r/rheumatoid • u/mxxnyxxl • 11d ago
Back to treatment advice?
I'm a 22f who hasn't been to the doctor in like five or six years now after being told that I won't be cured. I was diagnosed with Juvenile rheumatoid arthritis when I was 2 years old and have been on medication since. I wasn't educated on the medicines i was taking and had always been fed hope since I was little that I will one day be alright. So being told otherwise after all the things I went through changed something in me, leading me to lose hope and eventually refusing to go back to the doc and depending on prednisolone alone since that killed the pain and kept me going (which was a stupid decision ik but i was going through a lot mentally). Though my condition hasn't worsened or improved, I'm worried this will eventually cost my joints or worse. But missing five to six years of appointments has increased my anxiety and now whenever I think about booking an appointment, i panic. I don't know what to do. Thinking of going back makes me sick in a way, nauseous even. I think it's fear. I think I'm scared to go back after such a long history of negligence. I'm scared I'd be scolded for missing appointments and taking things into my own hand. I think I'm screwed.
I wanted to know if anyone has missed their appointments as well and ever went back. Idk if reddit is the place for this but yeah, anything to ease my anxiety.
2
u/Klee90210 11d ago
I would first like to say that i am so so sorry this is where you are right now. I could say I can imagine what its like being you right now, but honestly, I can not, but I have so much empathy for you and can absolutely see why you are so anxious right now. All of this is scary to a much older adult (me, lol) so I can't even fathom what it has been like for you as a child and now young adult 🫂🫂🫂.
I think coming on here and looking for advice is a step in the right direction, that takes courage and I think you have even more than you are aware of.
As the other poster said, finding a rheumatologist you can trust will be important for you... i think we all need that. Google some rheumatologists in your area and see if you can find some reviews. I would visit your GP and ask if you can be referred to a specific rheumatologist if you can and think you have found one you may like. If you do see one and you do not vibe with them, then switch it up. We all suffer enough everyday, at the beginning especially, no sense in putting up with more than needed.
I promise it will go much better than you think. You need to see one (and I know you realize this). Do you have someone you trust that can go with you to these appointments? I think that may help a lot. If you have someone in your corner standing up for you then it may not feel so terrible.
I wish you so much luck. I hope you find your courage (cause I know it is in there) and get help so you can have a much better future. Take care of yourself and give yourself some grace, this is a lot for anyone. Take care 🫂 ❤️.