To the Stranger Who Laughed at My ‘Sunburned’ Foot, Thank You
I was standing in line at the pharmacy when it happened again… a stranger chuckled as he asked me why “only” my right foot was so badly sunburned. Strangers have asked me about my “sunburns” on several occasions, and I used to extend a weak smile and nod, as if I agreed with their evaluation. It just seemed easier than explaining I have a rare, painful disease with a name they’d never be able to pronounce.
This time was different because I had grown tired of pretending. I looked at the stranger and said, “I have a rare disease that affects the way my veins operate. It’s quite painful.” The stranger looked at me with pity, and although that bothered me, something far greater happened in that moment. I realized I had set myself free from my disease.
For the first time, I felt brave enough to tell the truth. It made me feel powerful, like I had spoken up for everyone with this condition. I have erythromelalgia (EM), and it affects my right foot most often, but it’s not uncommon for both of my hands and feet to be burning and red, all at the same time.
This stranger’s timing was perfect, and it changed my life in a good way. I had been pondering how I wanted to handle my disease. Did I want to hide away in my house like I had been, or was it time to take a stand and bring some awareness to the world?
Fear had been holding me back for so long. Will I become a wheelchair user? Will I be incapable of working a full-time job someday? I don’t know. What I do know is I didn’t want to sit around any longer on my couch, suffocating myself with hours of television… and lying about my condition.
Although that stranger gave me some bravery, I didn’t feel like I could shout it out over a microphone to a huge crowd of people just yet. I started by telling my coworkers. I see them more than anybody else so it made sense, since the seasons were about to change. Fluctuations in temperatures can cause any of my limbs to turn noticeably bright red.
I was amazed at how understanding they all were. They hugged me and encouraged me to let them know if there was anything they could do to help. The odd part is I deeply struggled in telling those closest to me – my family and friends. I don’t know why. Perhaps it was because I didn’t want them to look at me any differently. I had been making excuses to them as to why I couldn’t do all-day shopping trips or outdoor events. Walking and sunlight makes my condition excruciating.
I didn’t feel great after telling them. Most didn’t have much to say and I still question why. But I told myself this isn’t about how I feel anymore; it’s about helping all of us who live with EM.
I decided to write an EM blog, and it circulated quite a bit through Facebook. Thousands read and shared our story. I felt so proud, but more than anything, I felt thankful to the man who asked about my sunburned foot that day. Without that moment, who knows where I’d be right now.
Follow this journey on Burning for Hope.
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