Sometimes, rheumatoid arthritis pops up where you least expect it, and I’m not just talking about the flares. Most of us have come to accept that RA isn’t a very well known disease, and that many people simply don’t know a thing about it. Much to my dismay, I learned this fact pretty quickly after I was diagnosed.
As soon as the words ‘I have rheumatoid arthritis’ were uttered, an explanation was quick to follow since inevitably, they had no idea what RA was, or worse, mistook it for osteoarthritis.It’s bad enough being sick, but being sick with a disease people don’t understand makes it feel ten times worse (or so I’ve come to believe). The frustration that often follows has spawned many a blog post, including my own about being stuck with what I have deemed a ‘Loser Disease.’
Three years into my journey with RA, I’ve reached a point where the frustration has receded to the backseat, and I have come to expect a degree of obscurity when it comes to what ails me. Ever anticipating that people won’t know what rheumatoid arthritis is, I’ve even developed a bit of an elevator speech, complete with a few catch phrases to describe RA and differentiate it from what most people think about when they hear the word ‘arthritis.’ Every now and then, I come across a person who actually knows what it is without me having to explain, such as my yoga teacher, and this always takes me pleasantly by surprise. It feels like a breath of fresh air when I realize I don’t have to launch into my spiel and can save that energy for something else.
But as I have discovered, there can be an upside to having a disease that remains mostly under the radar. When the topic of your disease is one you are trying to avoid, or at least deemphasize in your life, not having something like The Big C makes this a little easier to accomplish. In fact, I have gotten so accustomed to having a D-List disease that when it does pop up publicly, I feel a bit unprepared and taken aback.
Every time a commercial for an RA drug comes on TV, I become hyperaware of it. The never-ending list of horrible side effects gets stuck in my head on repeat like a bad song. It always changes my mood and makes me feel oddly self-conscious, even if I am all by myself. I simply don’t expect rheumatoid arthritis to come up unless I bring it up.
So imagine my discomfort when, while getting ready to head out for the day in Charleston on vacation with my boyfriend, the RA-bomb exploded without any warning.
My boyfriend had turned on the Discovery Channel TV show Deadliest Catch, all about extreme fishing, as I finished getting ready. In this particular episode, one of the young men on board the boat had received some very bad news from ashore- his younger sister had died. I was standing in the hotel room brushing my hair and watching the program along with him.They flashed a picture of the young woman onto the screen as her brother spoke of all the pain she had been in ever since she was a child, and suddenly, as if I had a sixth sense, I knew what was coming next . . . there was a pause, and then her brother said that she had had rheumatoid arthritis, and launched into his own elevator speech explaining RA.
Mid-brush, I felt my stomach lurch, and I froze. I was not prepared for RA to come up in this context, especially in front of him. For starters, one rarely hears about rheumatoid arthritis on such a program, and one very rarely hears about RA as a cause of death, though in its most severe forms, this can be a possibility. There was a brief pause, and I turned to look at him to gauge his reaction. I smiled, trying to lighten what I felt was a supremely awkward moment. He asked what type of arthritis they said she had died of, and I said, through stretched lips, ‘rheumatoid,’ then smiled even more brightly as if that would help.
I have been open about my rheumatoid arthritis with my boyfriend, but I haven’t exactly focused on the most negative, sobering aspects of the disease. Partly, this is because I am managing my RA well right now and am trying to maintain a positive outlook for my own benefit as well as his. I also honestly believe that there are a lot of reasons for me to be hopeful. There are a bazillion more options for treatment out there these days, and tons of research is being done.Plus, my RA was caught pretty darn quickly, so the permanent damage I sustained was minimal. I have a great team of doctors behind me, and a treatment regimen that is working (knock on wood). Clearly, the woman in this TV program suffered from a much more severe form of the disease, and did so over a long period of time, but even so, hearing that she had what I have made me feel scared and immediately want to disassociate myself from it, especially in front of my boyfriend.
Later that day, I brought up the program and asked him if he felt freaked out about it or wanted to talk at all. He made the same observation I did- that she clearly had a more severe form of RA, and had so ever since she was a child. In other words, she wasn’t me, and I wasn’t her, even if we did share the same disease. I felt relieved that it hadn’t upset him the way it had me, and let the conversation turn to another subject.
As anyone living with it knows, rheumatoid arthritis is full of surprises.Even if we are doing well and feeling comfortable with our prognosis, the cold hard facts can interrupt our lives in ways we least expect it. It’s important in these moments to make sure the lines of communication stay open- not only with the people in our lives, but also with ourselves.