When I was diagnosed a year ago with a rare and incredibly painful disease called erythromelalgia (EM), I felt like my world had abruptly come to an end. Not only was I surprised to learn I had a rare disease affecting only 1.3 in 100,000 persons, but it also wiped out any hope I had in a magical 10-day prescription cure. EM makes a person feel like they’re literally burning alive. The skin also becomes painfully red and warm to the touch. It’s not uncommon to see an EM sufferer wearing sandals year-round. Although it can impact any part of an individual’s body, it usually affects my hands and feet the most.
I spent a year fumbling around with my mixed feelings as if I were in my own “push me, pull me” game. I kept going back and forth, trying to accept my newfound disability. It reminded me of how a couple feels when they’re emotionally stuck in a dysfunctional relationship. Instead of ending it, they constantly break up then get back together over and over again. However, with a relationship there is a choice to leave. With a disability, there is no option to leave and no end in sight.
I wanted to revive the cheerful person I had been before this condition invaded my life. I also needed to learn how to cope with my unpredictable symptoms. So, I joined an online EM support group hoping it would help me better deal with my new everyday struggles. A kind, optimistic woman instantly befriended me in the group. Her name was Laura.
Our online friendship helped me in ways I never imagined. Because she had been diagnosed a few years prior to me, she understood my early stages of anxiety, fear, and most of all – my type of pain and emotional suffering. She was able to empathize like no other could unless they had this condition. Our friendship bloomed and whenever either of us needed encouragement to face our challenges ahead, we supported each other. We began talking about good things happening in our lives too.
I told Laura how excited I was when my husband had surprised me with Riverdance tickets for our anniversary. Although I eagerly anticipated the show, I immediately feared the long walk to the stadium. By the time we reached our seats, pain had overwhelmed my body to a point I had to sit down and take some deep breaths. Along with the misery came a flood of sad emotions. Events like concerts, shopping, festivals, and sightseeing weren’t fun anymore because I’m incapable of walking for long periods at a time.
After the show that evening I realized how deeply I had been struggling with the thought of using a wheelchair… but why? I confided in Laura who had previously ordered her wheelchair and she gave me a new perspective. She said her wheelchair would allow her to enjoy her life more. She’s able to go out with her spouse, friends, go on vacations, and comfortably enjoy seeing more of what the world has to offer with less pain. She keeps her wheelchair handy if she needs it. She was right, and in that moment my anxiety faded away. I had been pretending to the outside world that I had no physical struggles — which served no purpose.
After a year of chatting over the phone and computer, we coordinated dates and my husband and I made the eight-hour drive to Massachusetts to meet her and her spouse, Matt. Because Halloween is my favorite time of year, we decided upon Salem as our destination. It was an ironic location choice considering the many women (thought to be witches) that were actually burned alive in historical years. Although Laura and I weren’t witches, we did have “burning alive” in common.
We had a wonderful time. Halloween vendors filled the streets and we enjoyed every moment the town had to offer. Although our pictures depict us as healthy individuals, there were several moments when we consoled each other over the pain we were feeling. We couldn’t walk far without taking a break. It’s amazing how well we’ve mastered the art of pretending we’re not burning alive. We’ve learned to cooperate with our condition as best we can.
Laura’s optimism helped me to become a better friend to others who may be struggling with our same disease. Moreover, I’ve made some amazing friends along the way that I wouldn’t have met if not for my condition.
Follow this journey on Burning for Hope
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To learn more about EM, please see the following