I limit my words and posts when it comes to the subject of chronic illness- a subject I deal with every second of every day. I’d venture to say a lot of people in this boat do the same. “What if it just sounds like I’m whining, or just “accepting” this as how my life will always be?” That’s definitely a big stifler of my voice on the topic. But a bigger one than that is the looming voice of imposter syndrome.
Nearly every chronically ill person I’ve talked to over the years has eventually come out with the same thoughts.
I wake up every morning, and it usually doesn’t take long for the thought to pop in my head: “What if you’re just being dramatic?” Or the better one, “What if you’re just faking it and this is all in your head?”
“What if everyone feels this way, and you’re just dramatic and whiny about it?”
It doesn’t seem like any diagnosis, or test, or blood work result will convince my ridiculous brain of the facts: This is not normal. It is invisible. And very very real.
See, if I had a broken leg in a cast, it would be very easy for me, and everyone around me to take a quick glance and conclude that walking will be difficult for me at this time. It would all be clear, no explanation, no insecurity and humiliation.
But it’s not clear. There is no cast. There is no visibility. It’s just me. Standing there with my weak jelly legs, looking normal, fine, and healthy.
People don’t know that my trim little figure is losing weight, and that it’s not a good thing. People don’t know that my rosy face is not acne or embarrassment, it’s a hot flash. People don’t know that if I bend down to tie a shoe, I may collapse/faint from dizziness, or trigger a migraine.
The invisibility of most chronic illnesses may be the most devastating thing about them, because that invisibility doesn’t just cause a massive rift in understanding, it also gets to us. At one point or another (if not regularly and constantly) we will look in the mirror and be consumed with questions and embarrassment. How can we look so okay, and be so far from it? That feeling of having to prove the reality of our situations can be exhausting beyond belief. Even after diagnosis’, and tests, and paperwork, and all the other hoops jumped through, and boxes checked, the one giant empathy hindrance remains: We look okay.
I want to be able to discuss this topic without feeling weak, as though I’m airing my dirty laundry for all the world to see and smell. And the reality is, though it’s difficult to open up about the gritty, difficult details of day-to-day life fighting chronic illnesses, I desperately want understanding to reign over this topic, and I often find it so lacking. If I can bring any level of understanding to this topic for those who have not experienced it firsthand, I would be thrilled.
Trust me, we know we “look” okay. We’re not.
