Living with invisible illness is a constant struggle, and not just because of the illness itself.
On the positive side, the invisibility of migraine enables those of us with the disease to choose our confidants, the people we tell about our illness. We can go out in public on our well days without weird looks or well-meaning but awkward questions and offers of help. We can appear “normal,” and most of us strive very, very hard to do just that.
Unfortunately, that ability to appear healthy causes just as many problems – if not more – than it lets us avoid.
Lack of empathy from others
The invisible illness that allows us to pretend perfect health also makes it exceptionally difficult for other people to recognize, or in some cases even believe, that we’re ill. This perception that if we look fine, we must feel fine can make it very tough to ask for and/or receive help when we need it. It also often leads to weird looks or rude comments when and if we display disabled plates, get someone to carry our groceries for us, or wear sunglasses inside.
When we call in sick to work for the third time in a month due to an illness no one can see, our employers doubt us and our coworkers resent us. Because they can’t see how we feel – the nausea, the pain, the dizziness, the vision changes – they imagine we’re fine. They don’t know how hard we strive to make it in to work and to stay there, even when we feel so sick we can barely think, let alone speak. The invisible aspect of our illness can make us appear lazy, flakey, weak, and/or histrionic.
These perceptions are what we fight against when we push ourselves to finish “just one more” assignment before leaving for the day, even though (on a well day) we’ve already put in 10 hours or (on a sick day) we’re so dizzy and nauseous we shouldn’t be driving, let alone working. They are what cause us to say “yes” when we should be saying “no” – to that social event, to that client meeting, to that extra shift.
Bridging the gap between appearance and the reality
Learning how to balance our realities with other peoples’ perceptions of us – both the positive and negative ones – is part of daily life with a chronic invisible illness. Yes, we get to go out in public without the weird looks and self-conscious awareness of ourselves that people with more visible illnesses and/or disabilities often have to deal with, and I’m thankful for that each and every single well day that I experience.
But, on the sick days – the days when I’m so dizzy I drop every third thing I pick up, the days when I’m in so much pain sitting upright hurts, the days when my vision is blurred to the extent I can’t read, the days when I’m constantly misspeaking and can’t find the right words, no matter how hard I try – on those days, I’d gladly trade the anonymity of invisibility for a little understanding, a little help.
I don’t know how to bridge that gap, yet – the bridge between how I feel and how I look, but I’m working on it. I also hope that other people, healthy people, are coming to understand that not everything is as it appears to be, and that sometimes the only way to know how someone feels is to ask.