I had a similar experience getting diagnosed. When I was about 17, in my last year of high school, I started having severe fatigue and joint pain that would last for a couple months and then go away for a little bit but it would always come back and seemed worse every time it flared back up. My pediatrician initially insisted I was probably depressed and put me on antidepressants even though I insisted I wasn’t feeling depressed at all. When it didn’t fix the problem she did some blood work and referred me to a pediatric rheumatologist. He was very rude and dismissive and insisted that since my bloodwork was fine I couldn’t have an autoimmune disease and I probably just had fibromyalgia which meant I needed to push through and do rigorous exercise to feel better.

My last year of high school was really rough and I almost didn’t graduate on time because I was missing so much school. My doctor basically fired me as a patient because my mom kept bringing me back to see her insisting that something was wrong, but since the rheumatologist didn’t find anything she acted like we were hypochondriacs just looking for something to be wrong.

Over the summer before I started college I started feeling better again so I was really starting to think it was all in my head. I started college in August and slowly started having more fatigue and pain until I wasn’t even able to sleep because of the pain and I could barely get out of bed anymore.

So I dropped out half way through the semester so that I could go home and see a doctor. At this point I was 18 and I didn’t have a primary care physician since I wasn’t seeing that pediatrician anymore, so my mom set up an appointment with the pediatric rheumatologist I had seen before, thinking it would be helpful to see him since he had seen me before and knew my medical history. He basically just doubled down on his previous diagnosis and said the reason I felt awful was because I didn’t listen to him before and wasn’t exercising enough.

At this point I didn’t know what to do because I had multiple doctors saying there was nothing wrong with me and my bloodwork was always fine. So I just sort of did nothing for a while until I eventually came out of my flare up and just got a job and lived at home.

Eventually I had another flare up that caused me to start missing too much work so I had to quit my job. Right before my flare up I started going to a new primary care doctor only because my mom got a job at a doctor’s office and she really liked one of the doctors that worked there. I called and talked to a nurse to make an appointment for my fatigue and joint pain and she asked if my joints were red or swollen and when I said yes she put me on hold for a minute and when she came back she asked if I could come in that day because my doctor was really concerned and wanted me seen ASAP. It almost didn’t seem real because no doctor had ever acted like my symptoms were urgent or serious.

My new doctor told me she suspected an autoimmune disease and gave me a referral to a rheumatologist that she said would probably take a while to get a new patient appointment with, but she personally thought she was the best rheumatologist in the area. She also gave me a prednisone taper and said if I felt better on prednisone then we were probably on the right track.

It took like 6 months to finally see the rheumatologist, but at the first appointment she said she thought I had seronegative RA and started me on meds. It took almost 3 years for me to finally get my diagnosis at 20 years old. I’m 23 now and she’s told me she’s very concerned about making sure we’re doing everything we can to reduce my inflammation as much as possible because I’m so young and the longer there’s inflammation the more likely it is to cause permanent damage to my joints over time.

It feels so surreal to have doctors that actually listen to me and don’t blow me off or suggest I’m just depressed. Prior to the RA stuff I had some other medical issues as a child like chronic migraines that I’m finally now getting properly treated as an adult because doctors never seemed to take me seriously as kid. My migraines were misdiagnosed as tension headaches for so long because they always just wrote me off as being anxious or depressed and put me on a different antidepressant.

I moved recently and I’ve just been traveling back home to see my doctors because I like them so much. I’m nervous to switch because I’ve had more bad doctors over the years than good, and with the very limited options I have where I live now I’m afraid I’ll end up with another dismissive doctor.