Stop Explaining Yourself
Those of us with chronic or poorly understood illness find ourselves justifying and explaining all too often. I hear the stories daily from the courageous people with whom I work. Initially, anger and frustration shoot through my veins and then the quieter, softer underbelly of my anger appears, and sadness inevitably comes. We have already been up against so much. We have continued onwards against the odds, yet we are left hemmed in explaining ourselves.
When I married, my mother-in-law organized a shower. I surmounted the obstacles of traveling to another city that the healthy take for granted. I navigated cavernous airports on wheels. I did my best to find suitable foods in unknown restaurants while attempting not to stick out like a sore thumb. Traveling when living in a well body is fun. It pushes you outside your comfort zone. Every day- every moment even- is an adventure. Living with erythromelalgia (EM) and chronic inflammatory response syndrome (CIRS) is something else entirely. It means living outside of your comfort zone. It means days eluded by but in search of comfort. Every day- every moment even- can be a struggle to survive. When I wheeled into the fancy party filled with privileged people, most everyone received me with grace. At a minimum, they knew enough to know I had a “foot thing” I’d been desperately trying to figure out. Yet one woman- my mother-in-law’s friend who flies in her own private jet and has a husband who gets botox- a woman I’d known me prior to my foot debacle, backed away from me as if I had the plague…as if the humanness that was leaking out of me was somehow contagious.
Later while in my doctoral program, I learned I would be required to stand for 30 minutes while performing a head-to-toe physical exam. There were tight grading criteria and despite my registration with the disability office, there seemed no room for accommodation. I emailed the professor, explained my strange situation as best I could- I could complete the exam sitting. I could even kneel on my knees if need be. I could complete the exam, but I was fairly certain that I could not stand for the full 30 minutes. And if I managed this half hour standing feat, my lower extremities would be so distracting, I wondered if I could concentrate enough to remember my next move- to inspect, to palpate, to percuss. Like a finely choreographed dance, passing the exam depended on this. I was told by a medical provider charged with training other medical providers that I should most likely take an Ibuprofen the morning of the exam. If it was as simple as popping an over-the-counter pain killer, surely I wouldn’t have had to ask for accommodation, to limp down the aisle at my wedding, or to pray each visit that the checkout line at the grocery store was short. I am not sure if I did not push back because I was disheartened and beaten down or if it was because I was exhausted by the repeated explanations and justifications. I completed the exam standing without accommodation, eventually pushing back tears due to the fire growing increasingly hot in my feet. I passed- I passed standing- but I should not have had to. After all, it is the compassionate heart my father passed along to me combined with my own suffering opposite a white coat that makes me an exceptional medical provider. It is not the ability to stand for thirty continuous minutes that is essential. Maybe doctors should stop to listen to someone who has lost their legs in order to begin to understand what medicine is missing.
I remember the line in the sand. My husband understood the erythromelalgia. The diagnosis of EM involved much loss for him. He lost his travel buddy- the agile companion navigating airports. He lost after dinner walks. He also suffered from my playfulness that went missing. And to add insult to injury, he gained late evening chores I could no longer tolerate. He forged forward. Then came the diagnosis of Chronic Inflammatory Response Syndrome. If EM was a slap in the face, CIRS was a gut punch. CIRS meant leaving our home. CIRS meant avoiding most buildings until I was better. CIRS meant a sort of quarantine before the world would understand quarantine all too well. He pushed back against the weight of it all. “Is this even a real thing?” “Why isn’t it more readily accepted by all the mediocre docs you’ve seen?” Okay ,okay… I inserted the word mediocre, but you catch my drift. I was living with a man and in an environment where I was asked to explain myself daily, and I can’t put into words the toll that sort of justification of self takes. When your body breaks, you inevitably feel defective. When you can’t walk to take out your own trash or stand to stir your own soup, you lose a little dignity. But with each justification- with each plea to my husband to be on my side- I was losing something more important than dignity, more vital than a functional body. I vowed to stop explaining myself. I was done explaining myself to my husband, his family, my family, my friends, my friends’ friends, the doctors, my professors, the lady who was supposed to be advocating for me in the disability office, the neighbors, and the people that yelled at me when I pulled into a handicap parking space with a visible tag because I looked too young to need it. I was done.
“Feel free to educate yourself,” I said. “Come with me to a doctor’s appointment to learn more about CIRS. I’m happy to forward journal articles for you to read. It’s time for you to educate yourself if you are truly searching for answers, but I cannot keep justifying myself. This is my path forward. If you can’t be with me in healing, please don’t get in my way.” I’d like to tie this up like a Hallmark movie. I’d like to tell you he immediately hopped on the healing train. I’d like to tell you that the person who should most be in your corner will be in your corner, but the truth is that fear may get in their way. Regardless, your commitment is to heal, and this means no longer burning your precious energy explaining yourself. You’ve set a limit. Now sit back and watch this limit be tested. When they come for you, be ready. More specifically, be ready to repeat yourself. You’ve succeeded if you sound like a broken record. Uttered enough, your loved one will be forced to respect your line in the sand. My husband never did educate himself. He never did read the articles. He never did come to an appointment with a CIRS savvy medical provider. However, he did (albeit in time after many unpleasant rounds of repetition) stop asking me to justify my illness, its validity, in essence- myself. This freed me up to place my energy toward healing, and healing I did. The proof is in the pudding. When the naysayers see you healing- when they see your flares diminish, when they see the lights in your one bright brain begin to again shine- they will say it was all worth it. That’s nice but not the point. The laser focus is on honoring yourself, on placing your energy toward healing. Let everything else burn away.
You can read more about my journey as a medical provider hellbent on healing her own erythromelalgia here.
Read about healing my chronic inflammatory response syndrome (CIRS) and how that connects to EM here.
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