relationships

It's My Prerogative: Who to Tell About My Rheumatoid Arthritis Diagnosis

Sara Nash Health Guide December 02, 2008
  • See the accompanying comic strip!

     

    If you, like me, have a fun disease like rheumatoid arthritis, the question of whom you tell and when (not to mention how) can be one of the trickiest questions to navigate, and one that tends to keep popping up over and over again.


    With those closest to you, it’s usually a more obvious choice. I told my family within the first few days of getting diagnosed, and knew pretty instinctually which friends I felt comfortable enough to tell in the beginning. With colleagues, it was more of a toss up. I was comfortable talking about it with my boss, and also needed to ask for her support while I was in the thick of seeing specialists and coping with the fatigue and pain. With others, though, if it wasn’t relevant information for them to know about me, I kept it to myself. In fact, there are still many people at work who don’t know that I have RA and I see no reason to tell them, especially now that my RA is mostly in check and there isn’t anything that’s going to give it away on the outside (one of the ‘perks’ of having an invisible illness, if there is such a thing).


    But with the people in your life that you know well, just not that well, the choice is a bit stickier. While I’m not exactly walking around broadcasting my RA status to perfect strangers just for the hell of it (unless you count my blog and this comic strip, hmmm….), I have gotten to a point where I am much more comfortable with it being a known entity. That being said, I don’t always know when or if it makes sense to clue in the people I’m not as close to anymore, and not just because of how I might feel about them knowing, but also because of their potential reaction.


    I mean, let’s face it, when an acquaintance innocently asks you how you are, and what’s new in your life, busting out with ‘well, I got diagnosed with this chronic disease thingamajig’ is probably more than they were bargaining for. Nonetheless, if you, like me, have spent the last year (or more) of your life steering your way through doctor visits, medications and pain management, finding honest ways to catch up with old friends and not reveal your new RA status is a challenge. You are in the unlucky position of deciding whether or not to disclose the honest-to-god truth versus an easily digestible but very half-baked truth: the proverbial ‘Oh, I’m fine and things are just peachy ☺.’


    For instance, I recently had brunch with some friends I hadn’t seen in person since all this hullabahoo began.  Going into it, I wasn’t sure that I would drop the RA-bomb while catching up with them because, you know, it’s kind of a downer and usually leads to supreme awkwardness (plus, it’s nice to ‘forget’ about it for awhile and pass as normal). I skillfully dodged questions about why I’m not dating with excuses about too much work and not having enough time, blah blah blah. But when the conversation turned to health issues at the end of the meal, it felt odd not to just come out with the whole shebang, so I ended up chiming in and telling them what had been going on with me. Since I haven’t yet figured out a breezy, blasé way to tell people I have a chronic illness, it came out as a bit of a shock and was followed by some long faces and a lot of questions.


  • This is the moment when I always have buyer’s remorse and wonder if I did the right thing or if I should have just nodded sympathetically and sipped my mimosa and kept quiet. The fear in this moment is, of course, about not wanting to be ‘that person.’  You know, the sick, always-talks-about-her-illness person who brings everyone down and is not exactly a ray of sunshine. It also opens up a potential can of worms on what you might get back from them that you aren’t ready for: unwanted remedies and advice, or, more often, stricken looks of pure doom that make you think what you’ve got is way worse than even you knew. But, truth be told, this is what’s new with me.  RA is what I’ve been up to. That’s what my life has been about the last 14 months, and if you ask me how I’m doing enough times, you’re probably going to find out about it, ready or not. 


    No matter how many times I’m faced with the situation, a magical roadmap with instructions on exactly how to figure out whom to tell and when or why has yet to appear.  It often ends up being on a case-by-case basis, or a (doesn’t) need-to-know basis, or just about how forthcoming I feel in the moment. Ultimately, though, it’s a completely personal choice and completely up to each of us, each and every time.