A while back, exactly when it was I do not know, I made a conscientious effort to change the way in which I reacted to other people’s (sometimes misinformed) reactions to my rheumatoid arthritis. Prior to this point, I was always ready to–and often did–pounce on any individual who didn’t demonstrate a complete and thorough understanding of my illness.
After each one of these types of episodes, I often felt completely drained. Not only was I getting angry, probably more angry than was good for me, but I was also spending so much of my energy, which was in such short supply, on something that ultimately (looking back) was not of the utmost importance.
Right around this time, I realized two things. First, there are hundreds, if not thousands, of diseases, and very few of us are probably familiar with the most common dozen (or even half-dozen.) Sure, I’d love it everyone knew all about the ins and outs of RA…but if anyone asked me about something such as Guillain–Barré Syndrome, I wouldn’t have a clue. (This syndrome is in the family of autoimmune diseases, and out of full disclosure I must admit that I do have a slight clue of what it is about, but only because I read the Wikipedia page after hearing that one of my high school classmates lives with this disease…but this just confirms my point: even with a high level understanding, I would never pretend to understand the specifics of this disease.)
The second things that I realized was that a large majority of the comments that I received, as misinformed and annoying as the could possibly be (excluding, of course, the “it’s all in your head,” which I was actually told on numerous occasions!) were actually well-intentioned. Off the mark, yes, but nevertheless still spoken with good intentions. Take, for example, one of the prize winners: “But you look so good,” or “but you don’t look sick!” Previously, words such as these were all that I needed to…well…we’ve all been there before, I need not go into detail.
How could I possibly not be offended by such words anymore? Let me explain. A little under two years ago, for a period of almost six months, I looked like the walking dead. Weight was coming off my body way too fast, and my hair was falling out just as quickly. Every time I looked in the mirror, all I saw were the sharp edges and shadows that filled my face, below my eyes and around my cheeks. Co-workers and friends would discreetly inquire if everything was okay.
Fast-forward to the present, where my body has once again “filled out” (an understatement, if there ever was one!) and where on most days, at least over the past few months, I do indeed look really good. Sure, the pain inside never really goes away, and morning stiffness is something that I could do without, but when I look in the mirror now, my own first reaction is that I look “healthy.” So after having gone through that half-year period, where the last thing that anyone would ever tell me was that I didn’t look sick or that I looked good, nowadays, when I hear these same words, I take them as a compliment. I no longer interpret them as a negation of what is actually going on in my body.
When I realized these two items, and decided to change the way that I reacted to other people’s reactions, there was one last thing that I had to learn to accept. This was that no matter how much I myself thought I knew about rheumatoid arthritis, living with it day in and day out, there was still so much that I didn’t know about this disease. And no, I’m not referring to the scientific perspective, of what happens down at the molecular level. What I’m talking about are all of the emotions, feelings, and thoughts that accompany the pain and disability that I encounter on a daily basis…or to put it another way, there was still a lot that I didn’t know about my own reaction to living with this chronic and debilitating illness. Never mind other people’s reactions…
So I made myself a promise. Whenever I was with someone else and the topic of rheumatoid arthritis would come up, I would first determine what type of person I was speaking with. Group A were individuals who had a slight to thorough understanding of rheumatoid arthritis, or other similar autoimmune diseases. Also included in this group were people who weren’t too familiar with too many details, but who were obviously open to learning. Group B were the individuals who, for whatever reason, had no understanding of RA and other autoimmune diseases, and who had no desire to learn more.
With people in the former group, the conversation would roll along unabated. I would learn from them, and they would learn from me. On either side of the discussion, there might be misunderstandings or inaccurate statements, and while these were talked about and debated, they certainly were not jumped upon, or received with offense. The goal, after all, was to increase awareness.
I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.And for people in the latter group, I would listen to what they had to say, thank them, and then change the topic. My thanks were indeed sincere. You see, every time I felt like getting upset at another person’s reaction or lack of understanding, I would use this as an opportunity to connect with myself, and learn more about my own reaction to living with this disease. This ultimately served me so well, that I finally had to wonder to what extent my original angry reactions were just a way to avoid confronting certain issues myself, a way to avoid looking head-on at all of the confusion that often floats around inside of my own head.
So yes, I continue to receive responses and reactions which, at the surface, give me every reason I need to get angry. Instead of getting mad, though, I actually have gotten to a point where I welcome such statements, because as I’ve explained, each and every one of them is a reminder, and an opportunity, to learn more about my own emotions, feelings, and thoughts that arise from living with rheumatoid arthritis.
Raising awareness in others is certainly important, but it will never be as important as raising awareness within myself.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!