I Used To Be The Person Who Didn't Understand Chronic Illness

Before ankylosing spondylitis, before any strange symptoms, and well before I ever thought there could be something wrong, different, or sick about me, I didn't understand chronic illness. The fact is, I didn't have to. People didn't talk about it much, either. There didn't seem to be much understanding that invisible, chronic illnesses were a thing. And there certainly was no real awareness.

Between the years of 2005 and 2009 (I was in my early twenties), I spent four years attending a New York City-based progressive, political college, where I edited the weekly print newspaper and therefore was exposed to all sorts of social and political issues. I rarely heard conversations about disability rights or awareness and I certainly never stepped up to start the conversations. I also attribute much of this to being young, naive, and having the benefit of then-serious health privilege keeping me, well, uninformed, and ignorant. I am not proud of this. I wish I could turn back the hands of time to listen and learn about the plights of those with invisible, chronic illnesses.

Because the truth is this: I just didn't get it.

I didn't get that people needed special accommodations

I didn't get it when my friend with rheumatoid arthritis would cancel because she was fatigued. And I sure as hell didn't get how someone my age could have arthritis (cue, "Isn't that for older people?").

I didn't get how I — yes, infallible, perfectly healthy, totally mobile me — could have signs and symptoms of a disease I couldn't pronounce.

I didn't get that people pay money for medication — medication they often take for their entire lives.

That they had to pay for wheelchairs and navigate a massive lack of accessibility, especially in New York, where some subway entrances don't have an elevator bank.

I didn't get that people were in pain — all the time.

That they missed out on travel, on social occasions, and on school events because they were immunocompromised.

I didn't understand that one disease could have multiple kinds of symptoms, and they could all seem unrelated — leaving a person (say, with ankylosing spondylitis) not only having to manage debilitating back pain but also eye problems, infections, problems breathing, skin rashes, heart inflammation, and gut health issues.

24-year-old me was clueless

If you asked my 24-year-old self about any of this, she'd say she was clueless. That youth automatically means health. That only people who don't take care of themselves get sick. That, of course, my genes were fine.

As I said, there's no pride or joy in writing this. It's simply a confession of ignorance. An admission of living in a cocooned bubble, where my body hadn't started attacking itself yet. Where I could be limber and mobile and free from uveitis and an ability to stand up properly in the morning. Where I didn't feel so exhausted I could faint.

It took until I was about 26 to realize that some of the strange symptoms I'd been experiencing were systemic. My body wasn't exempt. And I started to see, simply because I had to, that there are millions of people living with invisible illnesses. And guess what? There are people who don't see them and who don't "get" it. The kind of people I used to be.

While I wish I didn't have AS, I do have AS. I can't spend my energy wishing for things that I can't change. AS in my lineage, my blood, and my fate. I am so grateful that AS has given me an opportunity to have greater empathy, to learn about myself and to dismantle my own privilege and ignorance, and to be able to advocate for others.

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