Revealing My Illness Makes Others Uncomfortable, but Hiding It Makes Them Doubt Me

My mom sounded positively giddy as she passed her phone to a coworker.

I sensed the ambush immediately.

“Um…hi,” says my mother’s coworker, “I heard you might be looking for a job. My daughter’s company is hiring.”

I have been disabled for three years now, and while it has always been my goal to return to work “as soon as I recover,” that recovery hasn’t come. If we’re being honest, I’m sicker now than I was three years ago.

This often doesn’t seem to matter to my mother.

She, like so many others, just doesn’t understand.

Like most reasonably healthy people, my mother has never been sick more than a week or two at a time, so she doesn’t comprehend – and how could she understand an illness that sets up shop and never leaves?

She thinks that she is helping. That, because she saw me last week, and I was able to share a meal – laugh, joke, have one of our inevitable arguments – that surely I have recovered enough to return to the workforce. Surely I can now hold down steady employment, so long as it’s not too labor intensive. Surely we can all return to the normalcy that I enjoyed (and took for granted) prior to that fateful day I fell ill and never recovered.

She wants that for me. Everyone does. I want it for myself.

But it hasn’t happened.

It’s the chronic illness “catch-22:” if you’re sick and you show it, most folks flee. No one wants to be around. It’s too frightening. It’s too depressing. But if you’re sick and you hide it – pretend you’re feeling OK, so you can muddle through even one iota of what you were capable of as a healthy person – then others see someone who isn’t really sick, someone who could and should return to those healthy-person activities of days-gone-by.

This catch-22 is unique to people struggling with chronic illness, and it’s something I wish more healthy people understood. Since beginning my own journey, I’ve met hundreds of people living with chronic illness and they all say the same: Some days are better than others, and sometimes I just fake it.

Depending on the disease(s), some people will be able to meet you for coffee Monday but be completely unable Tuesday. You may see one of us shopping for groceries Wednesday, but what you don’t see is the day spent in bed Thursday, Friday, maybe even Saturday because we made the extra effort. We may look nice, healthy, happy at the wedding but how many days and how many drugs did it take to get us there? And what was the fallout afterward?

I tried, in vain, to explain this to the coworker, as she insisted the work she was offering was “easy” as it “merely” required I sit at a desk and answer phones for eight hours a day.

She was polite, but I could tell by her tone that she didn’t understand.

And how could she? This is the chronic illness catch-22, and she, like most reasonably healthy people, has probably never been sick more than a week or two at a time. Like my mother and so many others, she doesn’t comprehend an illness that sets up shop and never leaves.

She hangs up and returns to work. I hang up and return to the couch. Last night was another one with no sleep. My neuropathy is acting up, so I will use my TENS unit, or maybe just some ice. I’ll take the meds if I have to, but for now I need to rest. This evening there’s a mandatory meeting, and that will require all my energy and focus.

I bet no one there will even know I’m sick.

That’s the catch-22.