What I know…

If you have never had a serious or chronic illness you think you know what it will be like.  You visualize someone—frail and emaciated with thinning hair—nervously checking their watch to see if they need to take medication.  These are the people you feel bad for.  People whose whole lives have been reduced to repetitive trips to the doctor and a litany of side effects.   And you think to yourself—with some guilt—I’m so glad I don’t have that.  Someone who has a serious illness—you think—must face the fact that their life is broken.

Pyoderma Gangrenosum.  8 glorious syllables that sound like a Harry Potter spell. Say it slowly with me with a flourish of the wand as each syllable pulls through the air.  Pyo….derma….Gang—-ren…..o…sum!  It casts an incantation that causes the target—36 year old me—to break out in painful, blood-filled boils.  Yes.  BOILS.  It’s an auto-immune disease that affects 1 in 100,000 people—it’s rare.  I also have it in my lungs.  Uber-rare. Freakishly rare.  The doctor who called it “exotic” made me like her immediately. I am many things. Exotic is not one of them.

In all of this insanity, as you embrace what it is like to have your body be totally out of your control, you might think it will suck.

And it will.  Oh boy, will it suck.  Like a big o’l Dyson vacuum it will suck.  There will be tears and exhaustion, anger and embarrassment, isolation and fear, surgeries, drugs, awkwardness, and the feeling that things will never go back to the way things were before.  There will be a mourning of the loss of you.

But here is the thing no one tells you.  The secret is that it will not suck all of the time.

You think it will.  But it won’t.

Some of the time it will be incredible.

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