What It’s Like.

I hadn’t heard of Grave’s Disease until the morning I began drug therapy to treat it, so I don’t mind when people ask me what it’s like or what it is. The issue becomes when I have their full attention and I see the light go out of their eyes because I’m not delivering the goods. A Grave’s overview doesn’t exactly bring the heat.

“Well, one night last year, as summer was really getting going, I had trouble falling asleep,” I’ll begin. “And then, I noticed an odd tremor in my right shoulder, followed by increased headaches.”

By the time I launch into when the anxiety was full-blown and I was sweating all the time, the crowd has mysteriously dispersed to the bar for another round. Or to check their phone. Or to wait what were you saying again?

So, Grave’s Disease is an autoimmune disease that affects the thyroid and causes it to over-produce. When the thyroid is in overdrive, the body goes berserk – it causes your heart to beat too fast, your thoughts to race. It causes insomnia, sweating and tremors, your eyes to bulge out. Before I knew I had the disease, I actually thought I was going insane. At first, the symptoms are easy to rationalize away – Oh, I live in New York, of course I can’t sleep and am anxious. Oh, it’s summertime, no wonder I’m having hot flashes…at age 30. Eventually, the symptoms culminate in such irrational thoughts and behaviors, you wind up at the doctor or in the emergency room. That was my experience. I’ve talked to a number of wide-eyed folks who share the same. (Yes we know, our eyes are huge).

What There Is:

Dizziness, fogginess, anxiousness

Wondering if it counts as illness when you feel OK. Wondering if this is the best it will ever be when you don’t

Occasionally wearing sunglasses at night to use the computer

Frequent eye drops. More ibuprofen. Less booze. Sweating with caffeine

Knowing the location of every public restroom near the 4/5 train stops on your commute to work

Waiting for Missy Elliot to agree to a Walk for the Cure, for godssake

Occasional growth of things where they don’t belong, like nodules. Occasional loss of things where you’d prefer they stay, like hair

An entry point of conversation with Sia

What There Isn’t:

Bleeding, dying, smoking

General clinging to life

Things falling out, or off

Consistent information on what not to eat (or wear, for that matter)

A cure

Better answers

Certainty

At present, I don’t look sick. Today, thankfully, I do not feel sick. When I explain that I am being treated, there is the collective and conclusive urge to wrap it all up, to proclaim “You’re well at last!” And for me to say “Yes, it’s OK!” so we can end our conversation and move on.  To discuss an ongoing and incurable disease is to agree to a narrative without climax. My particular illness moves in fits and starts. One morning early last winter I woke up with an odd feeling in my head, and blacked out mid hallway shuffle to the bathroom. Other days I shell out exorbitant amounts of money for New York spinning class and feel like a tigress.

This is what it’s like.

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