themighty logo

How I'm Coping With the Pain of Erythromelalgia


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.