The Hows and Whys
I’m a regular user of Twitter--I love being able to talk to other people who share my interests or, in particular, people like me who cope daily with chronic illness. It’s a good opportunity to put my rheumatoid disease into context, since there are always people out there who live with much worse pain and disability than I do. Most of them are amazingly upbeat and compassionate toward others, too, which helps me be the same. And it’s always, always good to know that I’m not alone; that although there may be no one else in my immediate family or circle of friends who has RD, I’m not the only one in the world who does. Twitter rocks.
It’s also educational and thought-provoking. I learn a lot. But I’ve noticed that there are questions that come up repeatedly, tweeted by nice people who live with serious, often painful diseases. They include “why me? Why do I have this awful disease? What did I do?” They ask these questions in general and specifically when a new flare starts. “Oh, no! Not now! What did I do to trigger this one?”
Maybe I’m weird (yes, of course I am) but I have never once asked “why me?” Naturally, I’ve wondered how I happened to get RD--none of my relatives have or had it--but I’ve never dwelt on it. Why me? Well, why not me? I’m not particularly special.
As for “what did I do?” I’ve never felt that my rheumatoid disease is a punishment for something I did wrong somehow. From the time I was a small child, I’ve tried to be kind and compassionate. I wasn’t perfect--I screwed up now and then just like everyone else--but my transgressions were small and I never purposely hurt anyone. Why would “god” or “the universe” drop the misery of RD on my narrow shoulders for that?
“Why do I have this awful disease?” I think we become ill for many reasons, but in most cases, they’re beyond our control. In the case of RD, researchers believe that genetics, environmental factors (which are unknown), some sort of virus (also unknown), hormone levels, or a combination of all of these may be the cause. Recently, they determined that smoking may be a trigger (I’m guessing that may also apply to second-hand smoke.) When I first heard that I thought (somewhat sarcastically) “of course. Because smoking is behind most of our ills, right?
But then, I thought about it--and had to be honest. I grew up with parents who were heavy smokers. I started smoking myself at 18 years old, and was a heavy smoker until about 10 years ago. Maybe it was that along with those amorphous genetic, hormonal, environmental, and viral factors that triggered my RD. Or, maybe not. Lots of people who never smoked or breathed second-hand smoke have RD, too. Consider children diagnosed as toddlers with Juvenile Idiopathic Arthritis, the childhood form of rheumatoid disease.
When I think about all this I end up back where I started. Maybe smoking has something to do with my particular case of RD. But honestly, who knows? The only fact we know for sure is that we don’t know what causes RD. It just is.
Finally, when a new flare starts or an existing flare worsens, I honestly never wonder “what did I do?” to trigger it, because most of the time, I haven’t done anything specific.
I say this knowing and acknowledging that their RD symptoms worsen for some people when they get unaccustomed exercise or exercise harder than usual. For others, it’s some form of food they eat, and for still others, stress. Personally, with the possible exception of unrelieved stress, I’ve never been able to point to any one thing that might cause or worsen a flare. Once again, for me, RD just is. It does what it does independent of what I’m doing or not doing.
And so I don’t berate myself. I don’t say “I shouldn’t have had that cookie yesterday. I knew better so I deserve this pain now!” I don’t regret having walked further than usual--or less that I should have. I have very little control over the stressors in my life, so I don’t see the point in blaming myself for them. In fact, I rest easy knowing that I do everything I can to mitigate stress, including mindfulness meditation. It remains anyway. That’s the world we live in.
RD is a tough, unforgiving disease. The symptoms are frequently constant and unrelenting. The drugs we take to treat it often cause other health problems, so we need to be vigilant about self-care. I truly believe that there’s no point in blaming ourselves for anything having to do with the disease. It’s counter-productive. Instead, I try to be grateful for all the good things and people in my life. It’s much easier on me. Living with RD is hard enough sometimes. Why make it harder?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?