When I boarded a plane on Sunday night, I did what most people do. I configured all my stuff so I would have things to do on the flight… phone, headphones, reading material… check. I was all set. Then I chuckled to myself.
“Gracious, this is stigma city,” I thought.
Of course, I didn’t really mean that, nor did I shirk away or hide anything I had assembled. Instead, I smiled, perhaps enjoying an opportunity to buck that stigma tide. I sat there with a whole magazine on mental health on my tray, assembling all the things while wearing a purple bracelet that reads “Epilepsy Foundation of Michigan.” That bracelet also has the phone number of that organization.
I smiled, bucking the tide, but some questions popped into my mind also. When strangers see this bracelet, particularly on a plane, do they assume I have active epilepsy? I no longer do. I’m a remissioner and have been for many years. But does this make people nervous? And since this has a phone number on it, might people assume this is a medic bracelet, like an “In case of emergency, call this number” kind of thing?
A neurologist gave me this bracelet last month, and I occasionally wear it around, normalizing a super common condition that people rarely talk about. That lack of talking makes life much more difficult with people who have epilepsy. I know this personally.
All of this made me ask on that plane, what if there was no stigma?
Goodness knows, particularly when it comes to mental health, stigma creates circumstances where people delay and avoid seeking help. But these needs are so common. When people do seek that help, they sometimes feel shame and assume they cannot talk openly about it. This also makes healing more difficult.
I’m convinced that community is a crucial element of healing for chronic conditions or even stigmatized, temporary needs. When people feel that needs-particular-to-oneself must be hidden from wider community, care is reduced, but even more, a sense of unnecessary isolation sets in. This is wounding in itself.
I know we can’t suddenly snap our fingers and rid ourselves of many various forms of health stigma, but what would we have to do to reduce it?
First, we would have to think a lot about our language. How often do we use words negatively with disabilities, conditions, or identities embedded? We say things like, “That’s so tone-deaf,” or “He was blind to the ramification of his actions,” or “I’m really OCD about that,” (when we really just mean particular) or, “That’s crazy!” or “She’s spazzing out,” or “I’m having a flashback” (to some odd, annoying life detail).
Second — and this is the longer, harder work — we would have to build a real sense of neighborliness where we practice particularity-of-care, where we lovingly know one another at greater depth with awareness that it is really not at all odd that each one of us has needs particular-to-us (healthwise, or fearwise, or personality-wise, or life-circumstance-wise). And with respect and agency of one another, we would participate in caring for those particular-to-each-other needs. This would require that we build an externalized and internalized sense of our neighbors’ dignity. This would require that we raise children to normalize that it’s completely okay for neighbors to be different because… well… we’re all different. We really all have particular-to-us needs. Some are more visible than others, and the visible ones require even greater dignity and respect. With respect, agency, and consent, we can all care for everyone’s needs.
It’s that simple, but it’s really hard work. And it really does require bucking a tide.