What’s in a name?
In my last post, I referenced my autoimmune disorder as ‘rheumatoid disease’ (RD) instead of calling it psoriatic arthritis or rheumatoid arthritis. I’m going to continue using the terms autoimmune disorder (AI) or rheumatoid disease (RD) instead of PsA or RA because it better describes the disease process instead of just one of the symptoms. The naming of the diseases by one of the symptoms has caused a lot of the public to be very confused about how serious these conditions are.
One of the biggest misconceptions about PsA or RA is caused by the word ‘arthritis’. Without getting too medical with you, the term arthritis basically just means inflamed joints with stiffness. There are many reasons people get arthritis, and autoimmune conditions are just one group of those reasons. People tend to think of all arthritis as one thing though, and so those of us with RD hear a lot of things like “my grandmother had that, and Tylenol was all she needed for her pain” or “your joints would quit hurting if you lost weight” or “I have that, and I take glucosamine and it fixed it”.
It is incredibly frustrating to have RD and people continually tell you how to fix it. It’s even more frustrating when they’re telling you how to fix it and they don’t even understand the condition. This is not your grandmother’s arthritis. Unless, of course, your grandmother had RD in which case you should know better.
I sound harsh. I should apologize.
But I won’t.
Instead, I’m going to offer some insight for those of you tempted to tell me how to fix my RD, imply that my pain isn’t real or isn’t significant, or imply that I’m suffering this just because I’m not trying hard enough to fix it.
RD is a systemic disease, and a malfunction of the immune system. If whatever cure you’re proposing had real merit, the rheumatologists and patient groups would be all over it instead of prescribing immune suppressing drugs up to and including chemotherapy agents. So while gluten-free, paleo, nightshade elimination, yoga, magic supplements or whatever can help some RD patients, it is by no means something that will work for everyone. Some of these, like certain supplements, are contraindicated with some medications. Many RD patients are struggling just to get by and can’t manage special diets or we’ve already tried them.
There is virtually zero chance that you would be the first person to suggest ANY of these thing to an RD patient who has had the diagnosis longer than 12 hours and access to the internet. Please, for the love of all that’s holy, keep it to yourself.
I know you want to help find a solution for your friend or loved one. That’s human nature. Believe me, we want a solution. But by the time we’ve heard that tumeric will cure our pain for the hundredth time, and either we can’t take it with our current medicine or we tried it and it doesn’t work, we just want to scream. Same goes for every other “cure” out there.
You can absolutely help, though. Until medicine or magic comes up with a real cure, we need all the help, love, and support we can get in adjusting to our new normal and managing our condition the best we can. Be understanding when we can’t participate with things the way we used to, or cancel at the last minute because we’re out of spoons. Offer tangible help when and where you can (and when we need it) in the form of preparing food, childcare, housekeeping, lawn care, handyman services, or just plain old companionship. If you’re a person who researches medical things, by all means let us know if you see a report or journal talking about a truly new treatment or breakthrough. If nothing else, just let us know that you hear us, witness our struggle, and let us know you’re with us. It helps more than you know.