Rare Disease Doesn't Disappear in the New Year


No, rare disease folks — specifically folks in the rare neuromuscular disease community, like me — cannot heal ourselves with New Years magic. For many of us, a cure and relief is our greatest wish. So when folks insist we “better get better,” or as one former friend put it, “if I prayed hard enough” and “got myself on a prayer list,” or as a therapist stated, “if you and your husband made more of an effort to get out socially and explain to people why you’re so isolated” (as we have done countless times over 20 years, as I am homebound in my wheelchair and experience seizures, muscular rigidity, and pain without relief or a cure), it can make this time of year even more painful from this denial of the reality of rare disease.

Right before Christmas, I had a follow-up visit with my primary doctor. My husband and I had just been at a holiday breakfast in a crowded diner awash in holiday cheer, doing the very best we could to have some semblance of joy and “getting out” to take in some festive fun.

My doc tells me they found a mass on my ovary from an MRI my rare disease specialist ordered in September, and no one had contacted me about it. This example is just one demonstration of why, as much as we may fight, advocate, wish and try, rare disease does not disappear for the holidays. My fellow rare disease warriors and I do not receive a vacation from our diseases; my husband does not receive a respite from his worry, from his sole caregiving labors, from our worst fears.

We might seem “socially isolated,” as this therapist put it, because only a few loyal friends reach out and offer their holiday greetings or a few much-needed and deeply beloved gifts. It is not the fault of rare disease warriors that we are too often abandoned and shunned by the people who fall away from our lives. All of us rare disease zebras need support and compassion and tremendously improved medical help. Many of us do not deliberately discard society during the holidays or any other time. Often, we have been discarded, but we keep fighting like the champions we truly are, against all of the odds, with little to no support for far too many of us — not for lack of knocking ourselves out, as many of you know. Frankly, we should never have to do that. Never.

Dear healthy friends, medical providers, therapists: The best gift you could offer in the new year is the gift of listening to us and remembering our words, our courage, our wisdom, our need for your compassion and your help alongside us as our fellow champions, not as our judges.

We already are miracles, regardless of a cure or no cure — especially because of our strength in the face of social and medical neglect. I invite able-bodied folks to offer acts of kindness and goodness towards rare disease warriors. To me, that’s what the holidays are about.

Image via Thinkstock.

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