My Diagnosis Dilemma

Patient Expert

See the accompanying comic illustrated by Jane Samborski

Right after I got tested for the first time to find out what was ailing me, I went out for brunch downtown with a friend of mine from yoga and meditation class. Over coffee and French toast, I told her about all the funny things going on with my body, and that I had been to my doctor, who was testing me for Lyme disease, lupus, and rheumatoid arthritis. (Note: this does not make great New York brunch conversation.) One of the things I said to her about being in diagnosis-limbo was that if I did indeed have something wrong with me, it was already wrong with me, and a diagnosis would just be a verbal confirmation, right?

Maybe it won't be such a big deal.

My friend, who is a Buddhist, brought up the notion of identity. According to Buddhist philosophy (I am a relative novice, so this is just my take on it), we perceive our identity -- our idea of who we are -- as a fixed thing, even though it is, in fact, changing all the time. I kept thinking about this over the next week as I waited for my results to come in, wondering what it would all mean and what it would really change to know something was wrong instead of just suspecting it. Somehow, with just a few pricks of a needle, I'd been thrust involuntarily into a whole new way of seeing myself. I was no longer just Sara, I was Sara-being-tested-for-a-possible-illness. I was Sara-who-is young-and-does-yoga-and-should-be-healthy-but-maybe-isn't? I was Sara-in-pain and Sara-plain-and-scared.

As I pondered all these new Saras, I tried to cajole myself into believing that, since I was already living with whatever I had, then how bad could it be to get that verbal confirmation? As it turns out, really, horribly, awfully bad. To hear that kind of news (did I mention I heard it over voicemail????) is not something you can ever prepare for. Even if you have watched a zillion Lifetime movies, when it happens to you, it is happening to you for the first time ever in the universe. I thought the world should stop so that I could begin to comprehend that I was no longer Sara-healthy-as-can-be; I was now Sara-newly-diagnosed-RA-patient. Crap. I was Sick-Sara.

It felt all wrong, and yet, strangely, true. I knew something had not been right. I had been limping around New York City for months in ugly flip-flops with a pregnant toe, unable to lift my arms or bend my wrists and in constant pain. I had stopped sleeping. But hearing "YOU HAVE RHEUMATOID ARTHRITIS," and confirming this chronic disease, hurdled me into an entirely new understanding of myself, and of whom I would now be to others.

Enter Sara-who-doesn't-know-what-to-do-with-her-RA. When you are first diagnosed, one of the big ol' pink elephants that suddenly appears in your tiny studio apartment (if you are me) is a sudden worry about how others are going to think of you when you tell them. How do you even wrap your mouth around the words: I have RA? And then, shit, how do you tell this kind of terrible news to people, especially people whom you know it will upset and hurt? Like your mom. I mean, that just seems like (and is) the worst possible thing you could ever tell a parent -- that you are sick and there is nothing they can do about it.

One of the things newly-sick-Sara knew was that I needed a little time to digest things on my own before I dealt with telling anyone else, especially in my family. I bought some books on RA in the hopes they would provide some good, handy advice on how to do this. They didn't. Apparently, I was Sara-on-my-own.

When I finally did tell my family, I did it in stages. I called my older brother and told him first. In a weird way, he became my rehearsal for telling my parents and my sister, all of whom I suspected would react more emotionally. I even arranged for him to be over at my parent's house (they live down South) when I called them a few days later and told them. I thought having one healthy kid around might help my parents not entirely freak out, or provide some sort of comfort to them. I guess it went ok. I didn't really beat around the bush - I knew they would know from the tone of my voice that something was wrong, and it seemed best to just get it out bluntly and be done with it. Somehow, I actually managed to be Sara-full-of-calm-and-serenity during the phone call (though afterwards, I was quite shaken up.) After that call was over, I made the last one, to my older sister, which was equally hard. Hardest of all was that I had officially become Sara-with-RA.

Over the next few days, weeks and months, new identities kept popping up as I struggled to genuinely accept that this disease was a part of my life and me. I became, in turns, Sara-resisting-it, Sara-wanting-to-ignore-it, Sara-keeping-it-secret, Sara-feeling-like-death-warmed-over-and-hating-it and Sara-not-going-to-change-my-entire-life-even-if-I-have-RA-dammit. This multiple identity rollercoaster went on for a while.

Then, at some point, a shift happened. I can't say exactly when or what caused it. Maybe it was just a matter of time and of living with RA. Maybe it was due to the relief of getting on meds that worked. I'm not really sure, but I no longer felt I was living under the tyranny of my diagnosis and what it had done to who I thought I was. Somehow, I stopped fighting it so hard and just accepted that it was a part of me going forward. And it was then that I realized that meant I got to define it on my own terms. I might be Sara-with-RA, but I was going to do it my way (cue Frank Sinatra.)

As I approach my one-year anniversary (is that something you celebrate?), it strikes me as a bit ironic that I have ended up defining myself so publicly by my RA status, but I have. I'm now Sara-who-writes-about-RA. I am, quite definitely (at least for this moment in time), Sara: Single gal with RA.

(Post script: maybe that should become my online dating name? Kidding...)