A weird thing happened to me the other day. I was ruffling through a bunch of paperwork from a few doctors when I happened to look down and see a paper that had JRA on it. Of course I stopped in my tracks and pulled out the paper. It was from my Rheum's office and there was JRA written under diagnosis on MY paperwork. I guess a lot of people see this on their paperwork and think nothing of it, I'm not one of them.
When I was two I was diagnosed with Juvenile Chronic Arthritis, this was what they called it if you didn't have the marker or look like you had JRA (what does JRA look like, I had swollen knees and swollen fingers), kind of like today's catch all JIA. From that day on I have been fighting for that diagnosis.
When I was a child I was always believed because I saw the same doctors and had my parents behind me to push doctors when they would waffle here and there. Once I became an adult and started dealing with my doctoring myself you would not believe the things I've heard from doctors. My favorite was I never even had arthritis I had Fibromyalgia, the doctor could not understand why I was upset and not thrilled. I went home and cried for days, I didn't contact my PCP for months after that afraid that she would also believe I didn't have RA/PsA or whatever we were calling it that day (thankfully, she was awesome and hugged me while I cried at her office when I told her). Imagine this happening for 20 years until my RF finally flipped positive and my ACPA was also positive and I knew doctoring would have to get easier from here and at my next Rheum appointment I was told I was in remission because I didn't have swelling and my ESR and CRP are normal. This is the reason I ended up with 9 surgeries in 8 years. Even if you can't see it, it's still there doing its job. Before I fall down this rabbit hole too deep let's get to the point of where I'm going.
My new Rheum diagnosed me by looking at me. I would say he's late 60's early 70's. I love old skool Rheum's they speak my language and they know and can see things that newer ones don't because they have a ton of experience. I saw the Rheum for the first time and he said to me I can tell you had JRA as a child, he asked me about disability (first doctor ever, and I'm not on disability) and a few other things I can't bring to mind at the moment. It was the first time I had ever seen anyone say they could see JRA on me (I know what he was looking at because I had stumbled on it when looking for info on my jaw, this is what reading a ton gets you). What doctors say in a visit doesn't always present itself on your paperwork as you may already know. Of course this Rheum is retiring and I get a brand new one in April (yes, I want to cry).
I'm sure you can imagine after fighting for the JRA/RA and sometimes even PsA instead of FMS, seeing JRA as a diagnosis on my records at 45 threw me for a total loop. I've fought 43 years for this diagnosis and now at 45 I have JRA? All of those years doctors didn't believe me, or patted me on the head like I was just a stupid little patient, or straight out called me crazy and told me I couldn't come into their office without my husband by my side and now I have JRA?
It really tilted my world, what if (and you knew I would start with "what if") my doctors had believed me from the start? What if just one or two of them had said, "Melissa, we believe you are sick and don't feel well, we'll get down the the bottom of this." Who might I be now if someone believed in me and I didn't have to fight for 25 years on my own? And before I fell down that rabbit hole I asked a friend and in her wise old age of 20 she schooled me with "let it go" and it hurt, because I knew she was right (and I thank her for having the guts to say that to me because not many would).
I didn't know what to do about the hurt and anger and the chance that I might have turned out different, more positive had my circumstances been different. I sat for a few days and thought about how to let this go. One night I was no closer to an idea when I heard my daughter crying and screaming upstairs, I have never moved that fast in my life. My daughter has Ehlers Danlos Syndrome and with that comes a lot of anxiety. That night she was coughing up blood and because my husband hadn't seeing her do it they were arguing. I had her sit down on the toilet and I sat down on the side of the tub and I listened to her story, I looked at her and told her "I believe you."
I can't comfort the baby, child, young adult, the 32 year old mom or the 45 year old arthritis advocate because my time is past and I need to "let it go" but I sure can make sure my daughter doesn't ever feel like no one believed in her....starting now.