“Rheumatoid Arthritis” is a mouthful that does not roll off the tongue. Without the benefit of an explanation, the average person has no idea what the hell it is. When I tell people I have “rheumatoid arthritis,” most people just hear “arthritis,” and assume that I have a sports injury or that I cracked my knuckles too roughly. They tell me about omega-3s and how I should consider swimming. Then they quickly change the subject.
When I was younger I would tell people that I had “arthritis.” Now I’ve refined my explanation, and say that I have “rheumatoid arthritis, a disease that’s a lot like lupus.” Even if this overgeneralizes, it does help people understand that I’m talking about a serious, systemic illness. Thanks to the wonderfully acerbic television show House, lupus is now familiar—most people now know that it’s a disease that’s for real.
Sometimes the lupus remark doesn’t do the trick. I have had to emphasize so many times that what I have is not at all like your grandmother’s osteo. I also struggle to explain to people that what I have is not an injury I can just “take care of.” Almost weekly someone tells me to “Take care of that” or to “Take care of yourself,” as though I hadn’t considered this already. For these people’s benefit, I add on the explanation that some of the medication I take is “like chemo, infused through an IV” and that my immune system is suppressed by the medication that “like chemo.” Most people, at this point, catch on.
With friends, I end up explaining the limitations more than I do the disease. In the past five years, I’ve been vocal about when I need to sit down and when I just can’t walk that far. These phrases work really well and the people that hear them understand that I need to rest, a.s.a.p. I am at a point in my life where I feel comfortable bringing up my limp and explaining what’s going on. Confronting the disease in this way has been really freeing–I stress about it less when I’m not hiding.
My immediate family has known about my RA for as long as I can remember, so there’s less to share. They do need reminders about how serious the disease is, and how my symptoms are worsening and will continue to worsen over time.
My in-laws pose a different set of problems (much of which I attribute to the fact that they’re Republicans). They are unaccustomed to long-term chronic illness and have a tendency to assume that if I’m not talking about RA it’s just not a problem anymore. I’ve crossed many bridges with them, from needing to refrigerate my Enbrel during my first visit to having my husband very loudly explain that I would not be doing dishes anymore post-Thanksgiving. My mother-in-law has started to read my CreakyJoints blog and has a deeper understanding about what’s going on. We have made great strides since I had to tell her to stop asking me about whether I’d tried Gyrotonics.
But the reaction to my disease has very little to do with how good I am at explaining it. Truth is, kind, empathetic people ask questions and learn to understand. My friend Elissa, after first learning that I have RA, took it upon herself to research RA and learn more about the disease. My husband did the same thing. My friends Anita and Laura found ways to make the incredibly inaccessible streets of New York City a breeze to get around, finding hidden benches and stools for me to plop down on. My friend Sree, an accomplished doctor who works with cancer survivors at the Cleveland Clinic, has spent hours of her free time counseling me about how to approach my doctors and helping me weigh the risks of different forms of treatment. My co-workers, and even my students, help me carry my books to class and have learned to recognize what my face looks like when I’m having a rough day.
Yet these people are good at understanding my illness simply because they are good at understanding. My husband had no idea what he was getting into, but has proved endlessly flexible and adaptive. Because that’s who he is.
What if someone doesn’t react in a helpful way to your big RA reveal? Well, use that reaction as a litmus test. It’s a decent way to figure out if someone is worth keeping around. Someone’s who’s good about your RA will be good to you.