Is Erythromelalgia deadly?
I sat with discolored feet in a thin gown and strange blue paper surgical socks vulnerably waiting for my medical savior to enter the room. I was finally at the hallowed Mayo Clinic and surely they would have answers about the hell I’d been living. The kind and renowned erythromelalgia physician and researcher, Dr. Mark Davis, entered the room. He said many things but what I most remember is something I surmise he felt I’d find comforting. He smiled and said, “The good news is that erythromelalgia will not kill you”. What I immediately thought but did not have the guts to say was, “Is that good news?”
If EM doesn’t literally kills us, it robs us of the things we love…
the things that make a well-lived life. Erythromelalgia took my ability to run carelessly across a green lawn chasing my nephew Aaron in the heat of summer. EM stole the painter in me that stood in front of a canvas for hours on end. Erythromelalgia was a thief even of the mundane- a grocery store trip without pain and fear, standing in the evening to cook dinner, showering without distress.
Before my diagnosis of erythromelalgia, I lived under the illusion that disease happened to other people. This was ironic given the fact that I was a medical provider that worked with people challenged with their own unique flavor of disease hell on a daily basis. Even so, denial- a long running family coping mechanism- made it easy to live in this alternate reality in which I was invincible.
Now I was stuck in a cruel vice. Trapped between the knowledge that EM wouldn’t kill me but may very well suck every reason for living right out of me. After erythromelalgia snagged long walks with friends, the ability to stand to perform a physical examination on a patient, and the pleasure of a glass of wine, it began stealing things that were harder to name. It robbed me of a feeling of competency. It invited into my life a feeling of being unsafe and vulnerable in my body. It reared its ugly head in my relationships and left me questioning what I had to offer to others. It made a mockery of my marriage. My life was stripped down to survival and shower chairs. I was once a bright light now dimmed. And, worse yet, I was ashamed of being extinguished.
While EM doesn’t directly kill a person, it takes 26% of us diagnosed with EM by suicide. That’s a staggering statistic. 1 in 4.
What do I hear most people say about their journey with EM? I hear them say, “I’ve quit life”. They say, “I’ve shut down”. And I say, “Good for you!” You may be thinking, “What? Why? That seems odd”. Because those of us with erythromelalgia are often good little patients. We visit well-meaning doctors who prod and poke us, who bring in interns to see the spectacle of our feet, who have few answers for us but who do not hesitate to send us large bills. We sell ourselves. See how resilient I am, how good, all despite this devastating and poorly understood disease. And in the same way that we are good patients, we are often similarly good partners, children, parents, and employees. If you quit on life for a while, good for you. You were engaging a strong survival skill. You quit being good and started being real.
When I think back on my journey to health- when I soak for 30 minutes in a steeping bathtub and ponder what I would have done differently- I would have been more real… with my family when I was having a hard day, with my friends about the accumulating life altering losses, and with my doctors about the severity of my pain. As a child, my favorite story was The Velveteen Rabbit. The old rabbit was not loved because he was beautiful, perfect, or without wear, but because he was real. Yet now, ashamed of my disease process and in pursuit of not being seen as flawed, I’d cashed in my authenticity. What if healing involved speaking my truth as much as it included dietary changes and a combination of supplements?
In my twenties, I used a multitude of colors to paint a Jack Kerouac quote on a large canvas, “The only people for me are the mad ones, the ones who are mad to live, mad to talk, mad to be saved, desirous of everything at the same time, the ones who never yawn or say a commonplace thing, but burn, burn, burn like fabulous yellow roman candles exploding like spiders across the stars”. While erythromelalgia had dimmed my light, it was I who surrendered it by choosing to be good instead of real.
For the record Dr. Davis, “I am not sure if the fact EM will not directly kill me is good news. It feels it’s stripped everything from me- everything that matters. I was a marathon runner who now measures her life in the short distances she can walk. I fear large stores due to the square footage. If I can stand to cook dinner, the heat of the stove eye causes my hands to flare. And while I am not depressed, I have lived with such severe and unrelenting pain for so many years that sometimes I consider swallowing a bottle of pills and sleeping forever. And I choose not to because it would wound the people I love in inexplicable ways. And while the creams offer me some semblance of relief, there must be bigger answers. There must be an entry back into the fabulous yellow roman candle life I knew before”.
I believe in our ability to heal from this grim reaper of a disease. I healed and daily I am inspired to see others healing. Our paths all look a little different, and yet on your healing journey, might I invite you into giving a middle finger to perfection? Let’s be real. Let’s be human together.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
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Sources-
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