Tuesday, April 19, 2016

But You Don't Feel Sick

Virtually everyone with an invisible chronic illness has dealt with "but you don't look sick", and the stigma and discrimination that goes along with it. People assume that you have to look perpetually ill if you have a chronic illness, and it's frustrating as hell - not every illness has obviously visible symptoms 24/7.  But it's not the only "invisible" part of a chronic illness. What those who don't battle chronic illness don't often understand is this: you don't have to always feel sick either. Not every single minute of every day for the rest of your life, at least. Take my condition, for example. I go through  mood cycles. Which by definition means I'm likely to feel differently from day to day, or at least week to week or month to month. Some days, cyclothymia kicks my butt, and I'm slogging through a depressive episode, or trying to reign in a hypomanic episode. Some days my anxiety and panic are pretty horrendous. Some days, I don't feel much of this at all, as long as I stick to my meds and general routine. That's right, there are times when I don't feel sick.  But let me clarify one crucial point:  this is NOT because I am free from illness on those days. Chronic doesn't go away - hence the reason that it's chronic. And just because I have a good day, or even good week or month, doesn't mean it's in "remission" (quotes for the fact that I'm not a fan of this term as applied to cycling, since obviously, it goes in cycles).  It's simply what it sounds like - a good day.

It may not even be a good day. It may be a good half a day, or a good couple of hours. It may simply not be a bad day, and those with chronic illness know you have to grab those opportunities because you never know when it may taken a turn for the worse.  I might have woken up this morning, or yesterday morning, with in a terrifying depressive episode. But as I'm rapid cycling, I've cycled out of it. Or I might wake up feeling perfectly fine, and cycle into hypomania by the end of the day. Something could trigger my anxiety at any moment. With a chronic illness, you are never not ill. You just don't have to feel it every living, breathing moment, thank goodness. Yet the general public seems to think that you do. They seem to think that if you were fine yesterday, how can you be unable to get out of bed today. Or if you were horribly ill last week, how can you manage to be out having a cup of coffee with a friend this week like a ... gasp... normal person. Aren't you sick? Surely you must not be that bad if you can manage to get out of the house. But this is ridiculous. It's like saying that a dedicated employee must work every holiday, even if the company is closed for the day, because otherwise they're clearly not dedicated enough. Battling a chronic illness takes a tremendous amount of strength, effort, and perseverance. If our illness gives us a "day off", why should we not be allowed to enjoy it?

Chronic and invisible illnesses deal with enough stigma. We already have to explain why we can't just "get better" or "push through it". We already have to explain that mental health conditions aren't just a bad attitude, that we're not just lazy or not trying hard enough, but that they're an actual medical conditions that respond to treatment. So if we have a day where we don't feel or look sick, let us have it without judgement We spend enough time battling illness. Don't make us battle your stigmatization and lack of understanding as well. 


  1. This is an interesting perspective, one I had not thought about. In the December issue of Wordgathering, we had an essay called, "But You Don't Look Autistic" and I think the same thing is often thought about people with invisible disabilities, but the idea of not feeling sick puts a different spin on it.

    1. I think people are finally *starting" to get the "but you don't look sick (or autistic or like you have a disability) idea - ie that these things don't have a certain "look". But I know a lot of people who deal with "well you seemed fine yesterday, how can you be sick today?" Or "You must not have been that sick yesterday/last week if you feel better today/this week". But so many illnesses are episodic that the way we look/feel can change rather rapidly.