Even The Nicest People Don't Get It
Last updated: February 2022
You know how living with ankylosing spondylitis can feel like speaking a language that only you understand? It can be really isolating and frustrating, even when other make a concerted effort to understand.
The thing is, I deeply appreciate it when people make an effort
I have nice friends. I have friends who listen. I have friends who try to understand. But they're also people who work, have kids, or have their own health or personal issues. It can be really easy to fall into a space where I expect them to understand everything I'm going through, especially since it's chronic. And when they try, despite their own life stressors, it makes me feel seen, respected, and loved, but — and there is a "but" — it doesn't mean I feel totally understood. And how could I expect to be?
Inflammatory diseases are strange beasts
You don't seem as sick as other people with different (often fatal) illnesses, but you can't participate in society like everyone else. You likely hide or make up for your pain and immobility (in an effort to take part in things or to not make people feel uncomfortable — #ableism), which means people don't really see how hard things are. And you don't want to whine, complain, and ask for help all the time — because that can get you nowhere fast. If you mention pain, they mention their broken ankle or their grandma's arthritis. If you mention fatigue, they mention that time they had the flu. It's so tiring.
So, you pretend to be fine and independent and ok. Because if you don't, you are seen as needy or histrionic, since a mostly "invisible" disease (and I don't even know if I like this term anymore) doesn't make sense to people.
Sharing, not sharing
So, you live in this liminal space where you're not sure how to share, or what to share, or how to connect. You appreciate when people care, but you know they don't really get it. You want to scream your pain from the rooftops, but does an invisible wound make noise? You want to be understood, without disclaimer or over-explanation. You want others to see just how deeply this disease is rooted in your every waking minute. It is so real for you, and you want others to know that.
In some effort to share my truth, I talk openly (but not too often) about my chronic illness. I try be scientific and detailed so people get it. I reshare chronic illness graphics on Instagram in hopes that, hopefully, someone somewhere will get it.
I save and make and repost these images because they matter to me. But at the end of the day, people can only extend understanding so far, and they can only be as generous as their own lives allow. Is this ideal? Fair? Fun? Hell no. But everyone is managing so much in their own lives, and we have to realize that as well.
This is the reality. And sometimes reality is rough and unfair. And so, at least, dear reader, we have one another.
Do you notice worsening flares in colder weather?