Learning to Speak RA
When you’re diagnosed with RA you become a member of an exclusive club. To quote the iconic comic, Groucho Marx (and others to whom the saying has been attributed), “I wouldn't want to belong to any club that would have me as a member.” Unfortunately, it’s pretty much a lifetime membership.
While I’m not aware of any secret handshakes or initiation rites for the club, there is a real requirement to learn to speak the language.
There is, of course, a whole new vocabulary list. You’ll learn terms for treatments and how they work, such as TNF inhibitors. In addition, you’ll learn names of tests you’d rather not know about much less have done to you.
Beyond that, however, is the critical component of any communication. When you’re speaking with someone, you need to be sure and tell them what it means to them. It doesn’t matter what the subject is – and RA is a pretty important topic – you need to put it in terms that are meaningful to your audience.
Let’s take, for example, pain. Pain is, unfortunately, a fairly common area of discussion in the RA club. But what you say and who you say it to can make all the difference in the world in getting what you need to deal with it.
If you say “pain” to your doctor, s/he is going to want to know things like how badly does it hurt, how often, is it consistent when you do certain activities, and/or does it interfere with sleep or daily activities. This kind of information helps determine what’s needed – either additional treatment such as medications (such as steroids or pain medication) or physical therapy, a change in your treatment plan, or even a referral to a specialist like an orthopedic surgeon.
Saying “pain” to your family, however, is an entirely different matter. If you tell your significant other you’re in pain, you need to describe what that means. Does that mean they’ll need to pick up dinner on the way home because you’re not up to cooking? Or does it mean a shift in household responsibility because you’re no longer able to do certain tasks?
Speaking about pain to your employer is yet another conversation. Again, putting it into context for them, does this mean a minor accommodation like an adjustable keyboard, or does this mean a lengthy leave of absence or a change in job responsibility?
In these three examples, “pain” means exactly the same thing to you, but it means radically different things to those around you. And while they are invested in helping you, it’s up to you to communicate to them how to do that.
Unfortunately, having a chronic disease comes with many challenges. Learning how to effectively communicate about them can make those challenges easier to overcome.
Has having RA put a hold on your ambitions?