I’ve come to realize that my life is fight club. And I’m about to break the first (and second) rules by talking about it.
Having to fight started before I can even remember.
It must have started when I was a toddler and developed the symptoms for juvenile rheumatoid arthritis. First I had to fight to even become correctly diagnosed. My parents took me from doctor to doctor to have my symptoms dismissed repeatedly. One doctor said I was copying the limp my grandmother had from her broken hip (in spite of the fact that I had visible inflammation)!
Then, of course, there is the fight with the disease itself. In nearly 40 years of RA, I’ve cycled through many medications. For me, very little has actually been effective and over the years I’ve accumulated damage and complications, plus grappled with treatment side effects. While the disease was most aggressive when I was a child and teenager, it still has been waging battle against me as an adult.
Another side of the fight is with myself.
You think it was easy to make myself take my medications, sit still for injections, undergo surgeries, spend countless hours in painful physical therapy? Learn to walk all over again multiple times? No, of course, you don’t. And it was (is!) a constant battle. It’s easier for me to take my medications now that it’s an ingrained habit, but the daily chores of RA are a constant battle.
What's frustrating are the unnecessary fights
But fighting the disease and struggling with treatment are all a part of the experience. What really gets to me sometimes are all the unnecessary fights. The fight club that is just fighting for what’s right. These are the fights that involve going to school, being able to get around a community, access to travel (being able to fly), getting treatment covered by insurance and so on.
I want to ask: isn’t it enough that I have the RA to deal with. Why do I constantly have to fight for what is right? Why drain me with these fights that should not be fights?
From my perspective these fights are ridiculous. From other perspectives, they are about not spending money to do the right thing or about not wanting to make the effort to do the right thing.
For example, a school may fight what a child needs for their illness at school because they don’t want to pay for it. An elevator providing access to the local transit system may not be repaired in a timely manner because the managers don’t feel the urgency of denying access to passengers with mobility disabilities. An airline may repeatedly break or lose wheelchairs because there is no consequence to their bad practices. A specialty pharmacy may deny approval of a medication prescribed by a knowledgeable doctor even when the patient has the insurance coverage because it benefits their bottom line.
The problem with the other perspective is that they don’t realize: I will not go away!
Keep on fighting
My fight club is the kind where I keep fighting no matter what because it is my life and I have no other choice. My fight club means there is no giving up on securing the best treatment, traveling within and outside my community, and tapping into the services that I require for equality. My fight club entails fighting until I win or the other side becomes so exhausted they scream uncle. My fight club is ruthless because it’s my life—and I am going to live it.
So, while I get exhausted by all the constant battles, I am well aware that I am going nowhere until the fight is mine. It’s my territory and I’m not going to cede even an inch. Welcome to fight club! The fight continues!
Have you managed RA fatigue better than you used to?