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It's Not Your Place to Disclose Someone's Else's Diagnosis

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It’s happened many times — I’ll be conversing with people I assume don’t know any of my diagnoses, and if my disability or mental illness comes up in conversation, their response tells me they definitely know about my health conditions. But I didn’t tell them, so who did? I’ll spend a few seconds feeling uncomfortable, wondering if a family member disclosed one of my medical conditions, and then I’ll move on — albeit a little miffed that I didn’t have the opportunity to share my diagnosis on my terms.

Sometimes in these moments, though, I can’t stop questioning how my diagnosis came up without my knowledge. Who shared it? Did they casually mention my cerebral palsy or mental illnesses in conversation? Did they share that I’ve been in treatment? Did they call me “brave” or “inspiring,” using “inspiration porn” to put me on an undeserved pedestal? Did the person who learned that I’m disabled respond that way too?  Or did both people simply acknowledge that I have a medical history and move on?

It’s often difficult for me to be forthcoming about my medical life, so I understand why people wouldn’t hear about my medical conditions from me. After all, I spent years hiding my cerebral palsy, and I try to keep any symptoms of my mental illnesses as “quiet” as possible when I’m around others, so being closed off about my medical history is practically second nature. Add in the stigma surrounding health conditions — particularly mental illnesses — and it’s the perfect recipe for nondisclosure. Mental health hospitalizations and chronic pain aren’t exactly comfortable fodder for everyday conversation.

Still, though, I wish I had more agency to self-disclose my health conditions — or not share my medical history if I so choose — without discovering that others have disclosed for me.

Sharing other people’s medical diagnoses — especially if they aren’t present when you disclose them — can be a slippery slope. If a health condition comes up in conversation, and you know someone with the same condition, it can be tempting — and even helpful — to share what you know. But if you start discussing the particulars of someone else’s medical condition without their knowledge or share symptoms that could make them feel uneasy, you risk violating that person’s sense of privacy and autonomy.

All too often, people with disabilities and illnesses find their conditions disclosed without their consent — even when it isn’t necessarily “safe” to be disabled. The lack of control over how any given person will respond to disability disclosure can make the process frightening — especially for those who have experienced their diagnoses being used against them. The world is not yet “disability-friendly,” which can put people who choose to disclose their medical conditions — or who have had their conditions disclosed against their will — at risk for ostracization, accommodation refusals, job loss, bullying, and even violence. The law may proscribe equal treatment for people with disabilities, but the world has not yet caught up, making free will for people with health struggles to disclose medical conditions imperative for their safety and mental well-being.

There’s a reason why laws surrounding private medical information exist — some medical information is uncomfortable to share, and it needs to exist solely between doctor and patient or therapist and client in order for a person with a health condition to feel safe. If these laws didn’t exist — and neither did medical ethics — you may run into a friend of your doctor’s at the grocery store, and they just might have the nerve to ask you if you’ve recovered from your recent urinary tract infection. Does the thought of hearing private medical information circle back to you in public make you cringe?

Outside of medical settings, people with health conditions can disclose as much or as little about their medical lives as they see fit — but only in theory. Once someone shares their medical history, they have no control over how the recipient of the information will respond, but some people with health conditions don’t even have the chance to share pieces of their medical lives on their own because the information is nonconsensually spread for them. Between parents who share compromising information about their children’s diagnoses online and people who either accidentally or intentionally “out” their friends or family members as mentally or chronically ill, there are plenty of times when a person’s agency to speak about their own health condition — which can be empowering — is completely stripped from them. The people who share others’ diagnoses may not even have medical histories, so they may not fully understand the nuances of the disability experience about which they’re speaking.

If you ever catch yourself about to share someone else’s medical diagnosis, remember that it’s not your place to do so. People with disabilities are often already be deprived of agency in so many facets of their lives, and knowing that others disclose their conditions or symptoms without their consent is an extension of this lack of power in society. If you’re still not sure whether or not you should share others’ diagnoses, reflect on how you’d feel if someone shared every uncomfortable detail of your last gynecologist appointment or therapy session. Until society fully accepts people with all types of medical conditions, disclosing a health condition can be risky — and it’s not your decision to weigh that risk for someone else and share their private medical information.

Getty image by gradyreese.

Originally published: April 8, 2022
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