It’s been a hell of month. This story needs a little back story.
I have Hidradenitis Suppurativa, an incurable and very rare skin disease. Basically, any place where I can sweat, these places can become infected and create painful lesions. Summers are the most painful and stressful times of the year for me. I’ve had this disease since at least 1999 or 2000. However, I wasn’t officially diagnosed until fall of 2008.
I’ve now had three surgeries to remove infections or sweat glands. The surgeries have been on my inner thigh, my groin, and this month, on the insides of my breasts. This disease can lead to depression, anxiety, and obesity. It can be incredibly debilitating since the pain can immobilize you. If it gets bad enough, people are unable to work and to file for disability. HS is not pretty and chances are high that it will get worse in the future.
I have a wonderful support system but decided to branch out and try to find a support group. I wanted to connect with others that share my disease to make new friends and learn about different treatments.
I found one.
It was a large and active group, and while I wasn’t welcomed with open arms, it didn’t matter at the time as I was content to lurk and read posts. However, this summer I started having out breaks again, and decided to be more active.
A question or two of mine was answered but most people seemed more concerned with their own problems. Understandable if you’ve got a lesion the size of a golf ball on your underarm. You’ve got your own problems to think about.
But other things came up. With Roni Loren’s recent troubles regarding images in mind, I made a small suggestion to the group and all hell broke loose. Suddenly, I was being stalked on facebook, this blog, twitter, even my wana website. I had to protect my tweets, felt as if I was cutting off a limb.
Who was stalking me? Fellow HS sufferers. I was accused of not having HS and a bucketful of other colorful names. This whole mess went on for almost two full weeks. I made sure to keep a breast of any talk of future attacks. It was frightening.
As authors, we are told over and over again, BUILD YOUR PLATFORM. But what if your platform works against you? I’m all over the internet. It was so easy for them to find me and leave nasty messages. Google yourself, you’d be surprised what’s out there. Comment left on a blog 10 years ago? Maybe. Old email address? AIM screen name from 2006? Maybe. Even my day job showed up in their searches.
Luckily, things seemed to have died down now thanks to the internet. My husband created a facebook page to drum up support for me and channel their hate. I can now tweet in the open again.
The most important tool I used to get through this mess was myself. I’m more than this disease. I’m a writer, a friend, a picky eater, a wife, and the girl who’s obsessed with Greek mythology. When you only identify yourself by your illness, you loose yourself and drown in the pain. You can’t loose yourself because this disease has no morals and boundaries. It doesn’t care if you are on your period, your wedding day, or interviewing for a job. It doesn’t care if you’ve got two chapters left to rewrite with revisions on the horizons and a fall deadline. It will do it’s best to bring you to your knees. It’s my greatest antagonist.
I’ve had my dark-night-of-the-soul moments, but I’ve come out the other side, a little bruised and beaten, but alive and ready to write again.
How do you protect your author platform? Do you struggle with HS or another incurable disease? If so, how do you manage it and your writing life?