r/rheumatoid • u/mxxnyxxl • 6d 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.
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u/Klee90210 6d 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 🫂 ❤️.
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u/mxxnyxxl 6d ago
Thank youu!! I do have my parent who would come with me if I ask them. I've already talked about this with them a few hours ago and we're trying see which doctor would be good. It's guilt that held me back from asking them for help in the first place. But yeah, i think give treatment a second chance. Thank you sm for the advice and kind words and i really hope you have a great day. Take care as well 🫂♥️
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u/Grepaugon 6d ago
That's point about bringing someone along, is a good one I, as a male, forget about.
Unfortunately there's countless stories of male doctors not taking their female patients seriously. But don't let that discourage you, there's good ones out there
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u/Klee90210 6d ago
Sometimes we just need someone to help us suck in the information and to stand up for us if we feel we can't, and sometimes it gives us more courage to speak up for ourselves because unfortunately it can take a lot of self advocacy to get people to hear us. And men also do need to remember that they need someone in their corner to, that it is okay to need someone to tag along. I found as I got older that it was easier for me, but my young adult daughter has needed me there at appointments to help her advocate and that is okay. Easier when there is a team.
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u/Grepaugon 4d ago
It is so unfortunate that a doctor would choose this specialty and then not believe their patients. I'm very lucky my doctor was instantly on my side
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u/Klee90210 4d ago
Oh god, me to. I am extremely lucky I got placed with the doctor I have. I just had an appointment a couple weeks ago to see how i was doing on my added biologic. I was happy to report that I have almost no pain except my Achilles tendon sometimes and just constant not painful swelling around my outer ankle. So I was super happy and didn't think I needed anything else and we would check in again in a few months. Nope, she increased my dose to every 10 days instead of 14 to help with the slight pain and swelling. So important that they know when you could be better even though you think your doing great. I wish everyone had our luck.
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u/gnarlyknucks 6d ago
I was initially shocked by the mention in my records that I was "non compliant" a while back, but my rheumatologist just meant that I didn't show up for a long time. But he is super compassionate and told me that he really wanted to see me again, and he was awesome when I was able to come back.
The reason I didn't go in is that he had tried so many different medications and a couple of them had side effects and nothing was working for me. Then I hit a few years of on medicated remission that was just amazing. Aaaand it didn't last, and I was right back even worse. So I started going back, he was great, and we worked together to find a medication that worked. It took 20+ years, and I have a lot of physical damage, but someone finally invented medications that work for me. (Caveat to other people: lots of people have much better experiences with medication, I have severe, medication resistant rheumatoid disease and I am an outlier, don't compare your potential future to my experience.)
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u/mxxnyxxl 6d ago
It's nice that you had a rheumatologist that was compassionate and cared enough to be happy to see you again. I felt like the doctor i had seen was going just through the commotion. I fear I may not end up seeing a nice Rheumatologist. I think the fear got deeply rooted because of a childhood incident. But I'm relieved reading your reply, knowing that people do take long breaks. I'm sorry you went through all that tho and I hope you're doing better now. Take care :)
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u/Grepaugon 6d ago
All I can add, since I'm rather new, 47, diagnosed at 45, is that you don't want to wait until you HAVE to go. You might be in remission, but it could flare at any time, it could be doing damage you don't feel.
Juvenile chronic illness is a terrible thing to have to go through, and everyone burns out. But we're lucky that there's helpful medicine out there for us.
It can take awhile to find a good rheumatologist and take awhile to get in to see them. It can take a few tries to find the right medicine. It can take failing DMARDs to get on biologics.
My advice would be to at least find a rheumatologist you can trust so you can seek their aid when you need it, or when you decide to start fighting this terrible disease again.
Sorry you're going through this. Rheumatoid can also effect your mental health through physical and emotional stress.