Rheumatoid Arthritis Awareness and Disclosure

Patient Expert

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Since my diagnosis two and a half years ago, the topic of telling has been a pretty consistent one in my life, and therefore, in my writing.   Most of the time, the decision of who to tell and how has felt like an extremely personal matter to me, but lately, I have begun to realize that talking openly about rheumatoid arthritis is one of the best ways to promote awareness of the disease and to put a face on it.   So, in honor of the fact that May is Arthritis Awareness Month, I have another story about disclosure to share.

Back in January, I out'd myself for the first time on a date. It went pretty well, and I felt like I had cleared a big hurdle by figuring out how I felt comfortable sharing this information about myself with someone I didn't know particularly well.   Perhaps conveniently, nothing more developed with the guy I told, so I didn't have to worry about dealing with what might happen next.   Instead, I had time to myself in my comfortable singleton existence to digest the experience. I decided telling would be even easier to do the next time the opportunity presented itself. Silly, silly me. When will I learn?

A few months later, I met a guy- a pretty amazing guy- and realized that telling someone you really like makes the disclosure bit a lot harder. After all, risk changes everything.   Our first date lasted 7.5 hours and was the most fun I've ever had on a date. On the train home that night, I felt giddy, but then felt myself go cold all over knowing that I had to tell him I had a stupid chronic disease.   I vowed to go ahead and get it over with on our second date, before I had a chance to like him even more.

The second date came"and was equally incredible"and then went with nary a word said about rheumatoid arthritis.   It was in the back of my mind the whole night as we were having dinner, as we strolled by the White House, as we leaned out over D.C. on a rooftop bar, as we drank our wine, and as we said good-bye, but somehow, it never made it past my lips.

Afterward, I kept coming up with excuses in my head like: we were having such a great time, why put a damper on it?   Or, the conversation was just so natural and easy between us, and rheumatoid arthritis just didn't happen to come up.

By the time the third date came around, I knew I was in for it. I really liked this guy a lot, but the time had come, no matter how much I had at stake.   He had to know, because I had to know how he'd respond. There was nothing about him to indicate that he would be anything but understanding and compassionate, but having a secret like RA can make you a bit distrustful and irrational.   When you feel like damaged goods (at least sometimes), it's hard to believe other people won't see you that way, too.

The date felt a bit like a countdown.   At first, I thought I'd tell him at brunch and get it over with, but then we were having so much fun talking and laughing that I honestly forgot about it. The museum we went to after hardly seemed like the appropriate place to have the conversation, even if it did go casually. I came close when we stopped for a drink, but then shied away.   Finally, when we were lying in the park soaking in the sun, I decided to bite the bullet.   Clearly, the tactic of looking for an easy way to slip it into the conversation was not working this time around, so I screwed up my courage during a momentary pause in our conversation, and without a bridge of any kind, I opened my mouth and said: 'Do you know what rheumatoid arthritis is?   Ok, good, because I have it.'

Smooth, right? Open mouth, insert foot. I'm not sure that I would suggest such a straightforward manner, but I have to be honest, in this instance, it totally worked.   Being the pretty much perfect and awesome guy that he is, he didn't flinch. He looked thoughtful and then asked me a few questions about how it affected me, how I was feeling, and then he listened. I told him that for the most part, I was managing my RA really well, that I took a bunch of medications that really helped, and took things day by day. Then he did something that surprised me- he thanked me for telling him and sharing that kind of information with him. For the first time, I realized that he had a side in this story, too.   Telling wasn't all about me.

Needless to say, I felt immense relief at getting that off my chest and seeing how he handled that kind of information. It made me think even more of him than I already did, and later that day, we ended up talking about it more in depth. I shared with him how it had started, how it felt to get sick at a young age, and some of the things that still scare me about it. The conversation wasn't grave though- it was matter-of-fact and honest, but not depressing. All in all, it couldn't have gone any better, and it didn't sour the rest of the date in any way.

So, it looks like I am officially entering new territory. Until now, I have only ever written about my dating (mis)adventures after the guy in question had scuttled out the door, never to be heard from again.   My biggest challenge regarding dating and RA has been how to tell someone I had it. Now, it looks like I finally have to figure out what happens after the disclosure.   Stay tuned"

Sara is the author of the blog, The Single Gal's Guide to Rheumatoid Arthritis.