What’s trending this week? Stories from my friends with rare, mysterious, and/or autoimmune conditions and their frustrating journeys to diagnosis. Most notably, my friend, artist Heather Thompson, has had a big shakeup with a new doctor completely revising her treatment strategy.
Heather posted a link to a great article, “Stop Saying at Least it’s Not Cancer,” https://themighty.com/2016/02/rare-disease-please-stop-saying-at-least-its-not-cancer/?fbclid=IwAR0qD9yNEdAOmuW_yUPHKhLKqrZxGVIrNVbWujOXIaUcQF1lhtzeQ71vWKg and wrote a preamble to her post about how easy it is to rally around people with cancer because others can wrap their heads around it. It has an endgame—permanent remission, while conditions like hers do not. Hers and others like it are perplexing and inconsistent, and there’s no endgame, just repeated attempts to control a body that refuses to function normally. It’s much harder to get, and stay, behind people with complex or hard-to-diagnose illnesses.
My current issues are all easy to understand (though I find myself explaining over and over to people). I was hit by a car on my bike, a 40-to-45-mph impact with less than a 1% survival rate. I’m like a car that’s been in a rollover accident—the body shop did a brilliant job, but the doors don’t have that solid thunk, and the electrical system will be haywire forever.
I remember, though, in my teens, how I got caught on the diagnosis treadmill for a series of allergies and sensitivities, mostly to food additives. I felt sick all the time. I was accused of malingering by most of the adults in my life. (Fortunately my parents were supportive.)
My family doctor thought I might have a blood sugar issue, so he tried me on a keto diet, which my body so disliked that I fainted at work and my condition got exponentially worse (when you load a person up with eggs she’s allergic to, that happens). He ordered a glucose tolerance test, which involved fasting and then drinking a huge quantity of a bright orange syrupy liquid. I hallucinated for hours—they’d never seen that response before. Later I figured out that I was hypersensitive to the dye and other chemicals in the sugar solution.
Eventually I quit eating because everything made me feel sick. I subsisted on obsessively washed iceberg lettuce and carrot salads with no dressing. It didn’t take long for most of my symptoms to go away, and I reintroduced foods one by one, listing which ones were obvious triggers. I read every book on allergies I could, and learned the difference between an allergy and a sensitivity. Sometime in my mid-20s I gained control of my health and my life is kind of divided into before and after control, the same way it is with my crash.
The fear and frustration of not knowing what’s wrong and not being able function like a regular human being is the worst. With autoimmune disorders, there is rarely a predictable pattern to the disease or a standard treatment that works for everyone. Even after diagnosis, there can be years of trial and error before anything helps.
I remember the character of Mike Monroe in Northern Exposure, the man with Multiple Chemical Sensitivity (MCS), who lived in the geodesic dome. Joel Fleischman, the doctor, didn’t believe Mike really had the condition—he didn’t even believe in MCS (sound like any doctors you know?). He asked, “Where’s the anger?” No one in this audience wondered that. Mike was long past the anger stage, and he was riding on renewed hope, that if he controlled his environment strictly enough, he could enjoy his life. Every new improvement was a victory for him—a step back toward the world he was once part of. When you’ve been reduced to a non-life without understanding why, every little thing you’re able to do, no matter how much work it takes, is exciting.
I’d like to hear from my audience about your diagnostic treadmill and where you are in that process. I’d love it if you found hope or insight from one another’s stories.