Sorry, Dr. D

Dr. D. was my pediatric rheumatologist from the time I was 7 until my mid-teens. He didn't catch me at the best time.

It wasn't that I struggled, or screamed, or cried; I made certain I didn't do those things. I simply refused to engage with him.

"How have you been feeling?"

Silence.

"Does it hurt when I do this?"

No. (Yes.)

"Ok, kiddo. Can you go on behind the curtain and put your gown on?"

Silent, scowling undressing.

When I think about Dr. D now, I realize what a kind man he was. He was white-haired, with a soft, low voice and a ready smile which somehow grew gentler the more miserably I behaved. He'd throw surreptitious winks at my Mom and Dad while I glowered my way through the exam. At every appointment, he'd remind me quietly that he'd be better able to help me if I was honest with him about my symptoms.

I told myself defiantly that I hated him. I hope he knew I only hated the situation.

He's now a Professor Emeritus at a med school north of here. I think I might send him a letter.

Merry Christmas!

This morning I got up, showered, and dressed for work. White button-down, dress pants, a necklace. I even bullied my hair into something other than a ponytail (a rare occurrence). I sat down on the bed to pull on the black socks I usually wear with my (low!) heels. I know it's warm out, but I vastly prefer socks to blisters.

I couldn't do it. The pain in my hands as I pulled the first one over my toes made me cringe, and by the time I had gotten it up to my heel, I'd lost my grip entirely. I rifled through my drawers looking for something easier to work with.

I had to wear Christmas socks. Red Christmas socks. It's not Christmas.

I gave in, flopped over and sobbed into my pillow for about 30 seconds, then went to work. (I have mastered the "quick cry"; it's fast, satisfying, and leaves no evidence.)

Everyone can see them poking out under my black pants. What the hell.

I'll just tell them I'm feeling festive.

The secret

After 23 years with RA, I still have not learned how to disclose my illness to others. I've read some wonderful posts on this recently, particularly this one from Leslie at Getting Closer to Myself. She writes of a continuum of disclosure; I have trouble even getting to the first level. Then there's the fact that I've got multiple illnesses to disclose. I keep expecting people to think I'm making it all up.

So far, disclosing the fact that I have an ICD has proven comparatively easy. My scar, frequently visible above the collar of a v-neck shirt, does some of the work for me. And ICDs are "cooler"; they're a fascinating technology about which most people have no preconceived notions. When I say "rheumatoid arthritis," though, people conjure up images of shrunken grannies in pink nightgowns, and frequently say one of the following:

"Isn't that an old person's disease?"

Or

"Oh my God, me too! I have this really sore finger!"

Or

"My herbalist can CURE you!"

My goal is always to strike a fine balance between letting people know that what I have is serious enough to affect every aspect of my life, and also ensuring they understand that I'm not crushed by it. When I do work up the courage to discuss my illness, I frequently end up downplaying the former and insisting that, no, you shouldn't worry about me! I'm absolutely one hundred per cent fine!

Too often, though, I just chicken out and opt not to tell people. This has not served me well. It means no one knows not to ask me to open a window or "grab one of those boxes", and it has also had the unfortunate consequence of leaving me vulnerable to the dreaded "sports ambush" (of which I shall write more in future). This is my own fault, of course, and I need to figure out something that works for me. You know, before the guy I've been wanting desperately to notice me finally goes in for a bit of hand-holding and is shocked to find that my wrist and fingers are fused. Yep, really happened.

I think one of the reasons I don't mind hospitals is because I get to be my whole self there, chronic illness, cardiac who-knows-what and all. These guys know the whole story. And they don't get weird about it.

It's kind of a relief. Nothing to hide.

In which I shall begin to blog

I'm a blog addict, but I've never had my own before. I've decided, though, that as I'm usually doing the equivalent of blogging in my head, I may as well put it here for the world (or, if we're being optimistic, maybe 3 or 4 people) to see. So, I'm de-lurking and leaping into the breach alongside some of my favourite healthcare blogs.

I'm a 25 year old woman with Rheumatoid Arthritis, Scoliosis, Hypertrophic Cardiomyopathy, and possibly Brugada Syndrome (a diagnosis-in-progress at the moment). I've had RA since I was 2, but the cardiac diagnoses have been ongoing within the past three years, since my uncle passed away suddenly as a result of HCM. In May of 2008, I was implanted with a Medtronic Virtuoso implantable defibrillator.

So, with my anonymity hopefully intact, this is where I'll complain, share humiliations (many) and small victories (also, I think, many), and think about the impact, good and bad, that illness has on my life.

Here goes!