Real RA: The Great Pretender

People with RA lie all the time.

How are you? 
Fine. You?

How’s the pain today?

Not bad.

Are you worried?

Not at all. I’m sure everything will be OK. 

It’s a necessity of life with this damn disease. If you're honest, not only will your friends and family start avoiding you, but you'll start to bore yourself, too. There's only so much unrelenting crap anyone can deal with before it gets old and miserable and you want to run screaming for the hills. But when you live inside the crap, there's no way to run.

And so you lie.

You lie to the people you love most because seeing the worry in their eyes makes you want to protect them. You lie to acquaintances because it takes a certain level of intimacy to talk about the true impact of your RA on your life. You lie to the clerk at the grocery store because she doesn't really want to know how you are while cashing out your orange juice, crackers and toilet paper. You lie to your doctor, telling them only the most urgent issues because otherwise you'd be there all day. And you lie to yourself, because if you don't, if you give it half a chance, the RA will take over and consume your life.

Sometimes, living with RA is like being a duck. You look cool and calm, but underneath you're paddling like mad. To achieve that cool and calm, you have to play fast and loose with the truth. The truth is hard and ugly and painful and cannot be allowed to gain purchase. The truth will slide over you, slowly covering all of you like an oil slick until it weighs you down and you cannot swim anymore.

That's what it feels like. The harder it is, the more important it can feel to maintain that duck-like serenity. Everything is out of control, so you control what you can. You hold on tight, pretending to be better than you are. You fear that if you let go, you might disintegrate.

But will you?

I spent my entire life pretending I was better than I was. More capable, with more ability, less pain and during the rough times, coping far better than I actually was. And then I had the Big Flare, got Enbrel, got better and made myself a promise. I decided to become the person I'd always wanted to be and that wasn't just about becoming a writer. It was also to not pretend anymore, to be emotionally honest with myself and with others and forcing myself to do some of that work in public, here on this blog. It hasn't been easy, but with practice I have (mostly) let go of the mask of being fine when I'm not.

In the process, I discovered that pretending takes an unbelievable amount of energy. That by being honest about my limits and how I am, I've actually ended up having more energy that I need for things like getting through the day and doing my job. Am I always honest? No. I don't tell the clerk in the grocery store exactly how I am doing today because I’m aware that there are social mores governing self-expression. I don't tell my doctor every little thing because both she and I have other things to do than spending the day rooting around in the minutia of my health. Most of the time, though, I tell it like it is.

And then there are the times where I become aware that the lesson isn't learned quite yet.

Two weeks ago, I noticed an odd swelling between my ankle bone and the Achilles tendon on my right foot. I have no idea how long it's been there — it didn’t hurt. It also felt as if that foot was turned in a bit more than before and the toes were slightly more bent. I told three people before I got a grip on the freak-out and one of them was my rheumatologist's secretary when I called to make an appointment.

And then I told no one else, because I feared that if I did, I would disintegrate.

I saw my doctor last week and the swelling turns out to be tendinitis — perhaps related to what must've been a flare, perhaps not. Bottom line is that I've upped my Humira and realized it’s time to pay more attention to being emotionally honest.