2 Questions That Pressure Disclosure of a Chronic Illness


“Coming out” with a chronic illness can be a very anxiety-provoking experience. You put yourself in a vulnerable position and are taking a risk every time. Will the other person dismiss your illness, treat you differently or will it make them uncomfortable? Will they recommend a tea that cured their aunt, or say you just need some fresh air? My favorite was being recommended coffee for fatigue for my chronic fatigue syndrome (ME, more formally known as myalgic encephalomyelitis). The worst was when someone responded by saying that ME/CFS doesn’t exist and it’s in people’s heads. Trust me, I’ve heard it all.

That is why being in control of when and how you disclose is so important. I find this to be difficult however, especially when meeting new people. There are certain questions that can impose disclosure, even if you don’t necessarily feel comfortable in doing so at that time.

 

“What do you do?”

I dread this inevitable question. I’ve been on sick leave from school for nearly two years due to a progression in my ME/CFS. When I go out (which isn’t often) the last thing I want to do is talk about being sick, let alone think about it. This question forces me to disclose something so personal to a complete stranger. When I try to give vague answers because I don’t want to disclose my medical history, it’s generally followed by more questions that then force me too.

This question also reminds me of the heartbreak from having to leave something I loved doing and didn’t want to stop doing. It also feels like an unbalanced dynamic right away, because their answer doesn’t require the same level of vulnerability and intimacy. This question is also a trigger for anyone unable to work especially. Others may perceive resting as “doing nothing” in our very production-oriented society. I already have to dismantle internalized ablism every day by telling myself my self-worth is not determined by my body’s output. It makes it harder though, when you live in a world which reinforces this message time and time again.

“Why aren’t you drinking?”

This is another question that entails this same level of immediate access to intimacy. There could be a very casual answer like, I have to drive or I work early tomorrow. Or it could be a deeply personal reason. I don’t drink because it makes the symptoms of ME/CFS severely worse for days afterwards. It’s not worth it, plain and simple. That answer has been met with, “I’m sure one drink won’t kill you.” My health decisions then become a debate that I didn’t even sign up for. I know friends who don’t drink because it counteracts medications they need to stabilize their moods so they can function. I know friends who don’t drink because they don’t want to end up in rehab again. You never know what the answer is, so it’s best not to ask someone you are just meeting.

painting by the author of a woman whose head has turned into birds

Disclosure on Your Own Terms

Disclosure is something that differs from person to person, and finding what your comfort level is can be an ongoing process. The main criteria I ask myself before disclosing are: Do I feel safe? Are they compassionate? A good listener? Empathetic? Have they shown vulnerability to me? Are they trustworthy? Basically they meet the criteria for a decent human being. It’s a judgment call I like to make on my own terms. I just wish it wasn’t so hard to have a fun night out, without having to lay bare my health circumstances right away.

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