The Mighty Logo

How I'm Coping With the Pain of Erythromelalgia

The most helpful emails in health
Browse our free newsletters

I have always believed that things happen for a reason — at least I did up until eight years ago. That was when I was diagnosed with a rare disease called erythromelalgia. I had no idea how I acquired this disease or what it would do to my body. I had no idea how it would change my life. Flares would come on, and it felt like I was being burned alive from the inside. Then, when the flares would stop, I went into a hibernation period – a long period of rest to recuperate from the intense pain my body had to endure. Those around me could not possibly understand the living hell I was enduring daily. Each day seemed to bring on a new torment.

As the years passed by, the disease progressed. I travelled across Canada in an all-out effort to seek help, at my own expense. I began to feel like a lab rat, poked and prodded, test after test, drug after drug. Nothing was working and the pain continued. I was told by one specialist I would eventually be disabled by this disease. I remember that day as clearly as yesterday, and the drive home was horrible. I cried the whole way, with the word “disabled” ringing in my ears. Could this disease be as bad as the specialist made it out to be? I found out quickly that it could be – if I allowed it to be.

Now, six years later, as I sit here writing this blog, I realize the disease is a terrible one. I have taken solace in the many support groups online. They are like a second family to me, and I look forward to meeting up with them every day to chat or debrief about the day’s happenings. I despise the cocktail of medications I have to take every day to ward off the flares that are always waiting to take over my body. To survive, I have tried to change my outlook on life. I focus on the simple things, like baking or writing. I enjoy the company of the few close friends who understand what it means to have a chronic illness. Many people disappear once they realize you are sick; the key is to focus your efforts on the ones that matter.

I learned very quickly how people are quick to judge those of us who have a chronic illness. On good days, people look at you and don’t believe you are really sick. On bad days, they assume you must be faking. It has taken me a long time not to care anymore. I have to focus on my health and not on trying to impress other people. This disease will not define who I am. I am not the erythromelalgia that has taken over my body. I am Kimberly Boissonneault: mother, wife, friend, teacher, survivor.

We want to hear your story. Become a Mighty contributor here.

Originally published: November 28, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home