Explaining RA

To be honest, I don’t explain my RA very often.  I’m selective about the people I choose to tell, for reasons both good and bad.

The first reason, a very practical one, is the fact that I am still a working musician.  This is a word-of-mouth business, and one that is very skittish about things like illness and injury.  If word starts getting around that I have a disabling chronic illness, people will stop calling me for gigs, regardless of how well-controlled my illness may be.  I have seen this happen before to talented friends who chose to disclose their conditions.  I made the mistake of telling one colleague about my RA, and then watched as all referrals from that quarter dried up.  At this point, while I am still capable of playing, I’d prefer to be the one to decide where my limits are, rather than having them decided for me.

The second reason is to avoid the following: “Oh, I have arthritis too, in my knee, but I just rub Ben-Gay on it and I’m fine.”  “Your RA will go away if you just take this supplement/eat this food/don’t eat this food/stand on your head and count to 50 backwards…”  Or everyone’s favorite: “But you don’t look sick!” I could go on, but I think you get the idea, and have probably heard these things before if you have RA.  Eventually I will get to the mature, healthy point where I can just smile and thank the person and let these things go; at this point, they still annoy and upset me, or, worse, make me want to argue.  This isn’t good for me.

The third reason is really NOT a good one: because talking about it interferes with my well-crafted denial.  Although I’m much less in denial than I used to be, it still pops up now and then in surprising ways, and one of them is my reluctance to tell people, and my hope that I can pass for “normal.”  (At a later point, I plan to write a whole post about my journey with denial.)  I have gotten better about this, and have told more and more of the people in my life.  Writing this blog helps too.

As I start to tell more people, I think about ways to explain the disease that are clear and simple, yet accurate.  Some of the explanations I have read make RA sound like something mild and benign, while others are terrifying.  While both sides are true for some people, most of us live somewhere in the middle, and I’ve been looking for an explanation that is thorough without being either overly scary or dismissive.

Enter Rheumatoid Arthritis Guy, who writes what is probably my favorite RA blog.  (If you haven’t seen it, you really should check it out.)  He created what I think is a great explanation, both simple and thorough – the 60-Second Guide to RA.  From now on, I think I will send my friends there when I want them to understand.

In the meantime, the guide has helped me to focus my “30-second elevator speech” – the brief explanation that gets the main points of RA across before people’s eyes glaze over.  I’ve never actually delivered this speech, but as I become more open about my condition, I’m sure I will.  The way I choose to share (or not share) the information is a reflection of the way I feel about the disease.  I know where I would like to be with it, although I’m definitely not there yet – my eventual goal is to be able to talk about my RA in a simple, calm way, as a fact of my life.   Not the central fact, which is how it sometimes seems, but simply a fact.  Not minimizing it, which does a disservice not only to me but to others with chronic illnesses, but also not turning it into a giant melodramatic tragedy.

Maybe I will get there someday…

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3 Comments

  1. WarmSocks says:

    I agree. I rarely tell people about my diagnosis – for similar reasons.

  2. Amanda says:

    Yep, I keep it under wraps as well- at least until I feel comfortable with people. Although some of the responses/recommendations/crazy at home remedies people give me are extraordinarily amusing.

  3. Sebastien says:

    excellent discussion going on here. Very enlightening.

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