We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from Katherine Meizel.
At 42, I’ve just been diagnosed with mast cell activation syndrome (also known as mast cell activation disorder, or MCAS) which, it seems, has likely been the root of my lifelong anaphylactoid reactions (or severe, life-threatening allergic reactions). It also was responsible for the postural orthostatic tachycardia syndrome that disabled me for seven years before diagnosis at 27 and for the Ehlers-Danlos syndrome that was identified as its underlying cause three years ago.
I’m relieved, and grateful, and sad.
I’m immensely thankful to the expert physicians who discovered at last that something is wrong, and that it’s not me
The worst experience I’ve ever had — worse than the most debilitating symptom — was not being believed, over and over again, for decades. It’s not only fellow females who know what I mean, but it's especially endemic in our culture for women (and anyone marginalized) to be denied this way, to have our experiences invalidated in all kinds of contexts, including the medical. You can’t run anymore, or walk, or even stand? It’s just because you don’t exercise enough. You faint? You just don’t eat enough. You can’t eat? It’s just because you’re a worrier. Lately the media has been offering a lot of pseudo-feminist advice, enjoining us to stop saying “just” and “sorry.” But this is the problem. It’s not only that our knowledge of our own bodies is diminished and dismissed, but that our suffering is understood to be just — and we should be sorry for it, because it’s our fault.
That kind of thinking seeps inside you. If you’re young enough not to know better, it shapes you inside. Your whole existence is eclipsed by the shame of a struggle without reason and with no scars to prove it. You’re told your tests are fine, the pain couldn’t really be that bad, there are patients with real problems in the waiting room. "You have to want to get better, Katherine." If you cry in the office, it’s evidence that your emotional state is causing your fainting spells. So you learn to smile and lie so they won’t send you to another psychiatrist, you learn to make the joke about white-coat syndrome first when your heart rate is 120 at your yearly physical, you learn to nod and agree when you hear, “Well, everyone gets tired.”
And you learn never to trust anything you think or feel.
You wish they would stop reassuring you that you’re not dying. You know you’re not dying. But when you’re 20 and can’t walk across a parking lot or make it to the front of a grocery store line (and have never eaten ice cream or pizza or chocolate), the absence of imminent death does not wholly feel like living. Then, eventually, you’ve taken all the recommendations and all the SSRIs and valium and beta blockers, done all the yoga, swimming, tai chi, yin chiao, meditation, biofeedback, acupuncture, and counseling, and you still fail, you fail to recover. You fail to stand and walk and eat and sleep and work and love like a normal person, like any kind of person at all. You’re not sick after all, then. They were right; you’re just wrong.
Over the years, with each unexpected diagnosis by an equally unexpected genius physician, you slowly learn that it’s not in fact your fault. It’s incredibly liberating, and it allows you to start figuring out what you really can do to help yourself. You realize that you don’t have to overcome to be a real person. In American society you’re supposed to either die or get over it — really get over — you’re supposed to surmount any obstacles. But in chronic illness, you have to learn to pick up the obstacle and schlep it around with you. That’s easier when you know its size and shape and weight — and most importantly, its name, because names are the most believed of all things.
So belief, for me, has been a relief.
I’m immensely thankful to the expert physicians who discovered at last that something is wrong, and that it’s not me. Now, I own my experience, and a wave of nausea no longer brings a wave of guilt. I’m done with shame. Still, I’m sad, too, because millions of people — including members of my own family —are still waiting for that relief. Maybe, like mine, their disease isn’t taught in medical school yet, because the research is less than ten years old. Or they can’t travel, either physically or financially, to another state like I did to see a specialist who knows what tests to order. Perhaps they’re unable to convince themselves that there is hope, or worse, that they are worth the trouble. I want to tell them: You’re worth the trouble. You have to believe me. There is no one whose belief is more important than your own.
Katherine Meizel, PhD, is an assistant professor of ethnomusicology at Bowling Green State University in Ohio.