You can’t tell from looking at someone that they have Chiari. Like many conditions, it’s an invisible ailment, hard to define, and hard to detect.
Unlike many people, a scan early on in my journey identified the Chiari. The challenge was having the medical people attribute my experiences to it.
In the beginning, I talked about it. It was scary, interesting, challenging, and I thought I would be having surgery. Then months, years went by and very few people asked me how it was going, how I was really going. We all assume that pain goes away. It became invisible to them. So I kept it invisible. But the pain had not gone away, my ability to cope with it changed.
The more specialists I saw, and advice from the GP’s, was that my suffering and discomfort wasn’t the chiari, and it must be something else… or in my own mind, I thought I was making it up. Maybe I’d done something wrong to deserve it. Maybe it’s invisible.
It seems impossible to make what is unseen, visible. To share the right words with the right people, in hope that they’ll know, and see, and understand. To make it un-invisible.
I’ve gotten SO good at hiding it, only telling those people close to me what I’m really going through. I’ve felt for so long it’s my own fault, so I get up, and I get dressed and put make up on, and put a smile on my face, and get on with life. After all, there’s no point in showing it, nobody realllly cares or wants to know about it. “Let’s just make it invisible” I’d whisper to myself.
When I get asked what my pain is out of 10, and I say 7. That’s an invisible, subjective piece of evidence. But it’s the best modern medicine has, when it comes to pain. An invisible scale.
I could tell my uber driver that I’m not feeling well and really do need to be driven right to my door, but I’m kinda mobile and functioning, and I’ve got make up on, so it seems like it doesn’t count. Better just keep it invisible.
On the days I have to get to work, and really want a seat on the train when there is none, how do I ask? I just look like a normal person trying to steal a seat. And who’s got the energy or time to explain why? It’s invisible.
Its hard to manage when it’s super loud on the train and there’s only standing room, and what do I say to the guy who pushes past me and jars my neck? I mean, he should watch himself anyway, but I feel like I want to scream “I’m not OK!” But that would be making it visible, and opens up my vulnerability.
The world is not geared for debilitation, seen or unseen.
We are a capitalist community, where value is measured in productivity. We all judge each other this way, even if we don’t mean to. Our judgments are often invisible. We generally find disability awkward. We sometimes think people are making things up. We observe people complaining, and maybe they don’t . We think health problems go away, and we don’t have a clue what to do with the ones that don’t.
This pain, and dizziness, and fainting, and ringing in my ears, and anxiety and depression… I have managed to hide it well. When I choose, I have managed to make it invisible.
The cool thing about invisibility, is that sometimes, if you look closely you can find clues.
I implore you to look closer for the clues. For your loved ones and their invisible struggles, find clues, and then ask them about it. That is the way to really be seen, when someone pays attention to you. It’s not about sympathy, it’s not about whether someone deserves something more because they’re not complaining, it’s about acknowledgment for everyone, to be seen. That is what people really want.
When it comes to pain, mental health, or other ailments, often there is nothing on the outside, that shows what’s happening inside for people. So I think it just means we all need to show a bit more kindness to everyone.