The Pain of Rarity

This hell? One in a million.

Technically, it’s more like 26 in 100,000. (For reference: a disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000, in the USA when it affects fewer than 200,000 Americans at any given time).

I don’t know how to write about this disease without it sounding like a melodramatic Thought Catalog piece. A bit of pain. Some pithy statement about rarity and diamonds and blessings. Maybe a little angst (perhaps anger?). And ending with hope. Sometimes that hope is real, sometimes it feels a wee bit disingenuous. Today, February 28th, is Rare Disease Day, so please indulge me just a little.

Life with a rare disease

I’ve been suffering from this disease for quite some time. I’ve known what it was since June 2010. I’ve tried more medications than I can count. I’ve had over three dozen procedures. I’ve seen more than my fair share of confused doctors. I’ve managed to keep the suffering a secret from many in my circle (that girl with the pearls and false eyelashes sure looks healthy and happy).

The near constant pain that begat the nickname “Suicide Disease” isn’t the worst part. CRPS is rated a 42/50 on the McGill Pain scale – the most painful condition known to medicine. Worse than unprepared childbirth. Worse than amputation. There are plenty of other articles out there on the basics of this disease.

The medications on differing schedules so you take something nearly every hour aren’t the worst part. One medication every 3 hours. One every 4. A different one every 6. A fourth every 12. A fifth at bedtime. One last one as needed.

The fifty (and growing) nerve blocks, infusions, surgeries, pumps and trials aren’t the worst part. I miss Dr. Illini but Dr. Hipster is dead to me. Dr. Mean-face isn’t allowed near me after telling me that I had nothing to complain about. The nurses and techs whose faces fall every time they see me back for another attempt at temporary relief. But all of that isn’t so bad – it’s mostly people trying to make it better.

The lack of sleep isn’t the worst part. Eight hours in bed leads to maybe four hours of sleep on the regular. My Fitbit has made my sleep goals just over 5 hours. My body has gotten used to functioning on little sleep – I still make it to work [almost] every day.

The knowledge that this is progressive and incurable isn’t the worst part. My mamma didn’t raise no wimp. I’m a stubborn little lady who is going down swinging. You show me an incurable disease and I’ll show you a fight to the end.

Balance

With all of that, you still see me smile. You still see me dance. It’s how I make it through the worst part.

The worst part? It’s the loss and isolation.

The friends who don’t call because I’m no longer a good-time gal. The bars, the parties aren’t my scene and are rarely a place I feel comfortable. When I do go out, it’s a hard to make it all night. After an hour or so, I’ve likely used up all my spoons.

The friends I don’t see because travel hurts. I miss you so much it hurts my heart.

The fear I feel when someone touches me – that they’ll feel the hard plastic device that sits just below my skin or brush a leg who thinks a gentle breeze is pain, makes it nearly impossible to, well, be physically close to someone. (Mom, you can forget you read that part). Imagine a first date, or maybe a second (I haven’t quite worked out when it is appropriate to tell someone that I’m part cyborg). A draped arm, a hand on a hip while dancing makes me tense and pulls my head right out of the moment. Or a twenty-fifth date (if I ever get there again) where I still squirm keep my left leg in check. Out of the way of cabinets, chairs and hands on knees. It’s a lonely place when physical touch brings pain and anxiety.

The dance classes I miss because my body isn’t mine. Pretty much my main social activity is dancing – it’s how I fight against this disease. How I keep it from ruining my whole body. It prevents muscle atrophy, gives me a social network, increases strength & balance. Each time I lose a class to the pain, it’s like a little rip in the hope I cling to. Each time I lose a class to the pain, it means it’s just me and my cat hanging out and hoping things get better enough in a jiffy.

The hardest days with this disease are the days that it makes me feel alone. Whether it is because it is a doctor that doesn’t understand, a friend that stopped reaching out, or a touch that caused my body to recoil

So, today, in my honor, reach out to a friend.

Especially if you have a friend who is hurting or suffering. Reach out on their terms. Don’t just invite them to a party (although you should do that even if you think they’ll say no), but find an activity that they can do – dinner, a movie, a board game, a cup of coffee that you bring over to their house. Give them a hug, a squeeze on the hand (or a touch they can tolerate). Let them know they aren’t alone.

This hell might be one in a million, but I don’t have to be alone. 

Learn more about Rare Disease Day. 

5 comments

  1. Melissa says:

    Mary Fran, thank you for this incredibly moving essay. I’m going to hold you in my morning thoughts, and make reaching out a daily goal. Keep dancing, please keep writing, and thank you for raising awareness, one day at a time.

  2. Tammy says:

    I too suffer from this and it is a hell I wouldn’t wish for anyone. Your words express a feeling I have felt all too often but rarely say because of the fear of sounding like a drama queen. So I thank you for saying it and writing so beautifully.

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