I was listening to a podcast interview with Julie Flygare, a person with narcolepsy who blogs at REM Runner, wrote a memoir called Wide Awake & Dreaming: A Memoir of Narcolepsy, and runs a nonprofit called Project Sleep. I think she’s pretty neat (and she’s really one of the biggest narcolepsy activists/advocates), but I was struck by something she said that raised my hackles…something that I hear often in spaces for sick and disabled folks. The gist is this:
I thought I was going crazy, but I found out that I have [xyz illness/disorder/syndrome/impairment]!
I hear a similar thing when talking with folks with physical disabilities like paralysis:
Just because I use a wheelchair doesn’t mean I’m dumb/mentally impaired/cognitively disabled/an idiot (insert other ableist terms…many times the R word)
Think about this for a second. I understand the intent behind the first paraphrase, especially as a woman. Many times women who try to address a health concern with a doctor are told that it’s “all in their head,” they’re “hysterical,” and the symptom(s) aren’t real. This happens a lot with fibromyalgia and chronic fatigue syndrome (also called myalgic encephalomyelitis). People want to be believed, especially by their doctors. It makes sense. We want our realities to be recognized and validated, especially when it feels like our bodies are attacking us out of the blue.
The problem, however, is that these words end up making mental health concerns to be “not real” and that is totally problematic. For instance, ask anyone who has panic attacks if what they’re going through is real. This notion of what is real and what isn’t is really sticky. A person who is having a panic attack is having a real reaction to a stimulus, whether internally (maybe life has been stressful & they thought about something that’s causing them great anxiety) or external (maybe it’s related to a phobia and it’s hard for someone else to recognize the trigger). For folks with more stigmatized psychiatric symptoms like hallucinations, delusions, mania, suicidal ideation, all this discourse does is create more stigma (and further hurt a person’s overall health as stigma is related to a slew of negative biomarkers like high blood pressure, high blood glucose, inflammatory markers, etc).
This “crazy talk” needs to stop in other places too (Fit is a Feminist Issue just did a blog post about athletic events or pursuits being called crazy, and there are a bunch of mental health advocates & psychiatric survivors trying to get people to stop calling things like the weather “schizophrenic” and “bipolar”). People’s lived experiences, diagnoses, and identities shouldn’t be used as metaphors for crappy things!