You Probably Don't Understand My Disease
Last updated: March 2023
When I tell people that I have an autoimmune condition, they always ask, "Oh, what is it?" I know they're not going to know what it is, let alone what I'm actually saying.
It's sort of like saying "I'm from Jersey," and someone going, "From where?" and me knowing they have no idea where Rahway is. And they never do.
But I utter an-ky-lo-sing spon-dy-lit-is anyway, and they go, "Wait, how do you say it?" and I repeat it. It always follow that they look at me with wide eyes, terror, and utter confusion.
"That sounds serious," they usually say.
I used to tell them I'll live, it's not so bad, don't worry about me, that it's "sort of" like rheumatoid arthritis, AS's much more famous chronic illness cousin (except they're not really the same thing at all). If I'd say it was a spinal thing, half of the people would go, "I have a bad back too," which, you know, is utterly delightful and not at all reductive.*
*That was sarcasm.
I'm learning to be honest about my ankylosing spondylitis
But these days, I've come up with a more succinct answer that most people understand — which doesn't require me to downplay my reality:
"I have a degenerative autoimmune disease that causes inflammation, chronic pain, and fatigue; it's rooted in my spine and makes mobility very hard for me. Unfortunately, there's no cure. Most people don't die from it, but it can cause serious health issues."
I usually don't mention that it also affects all of my joints, my eyes, skin, stomach, and heart health, or that I am CONSTANTLY in pain or that my brain works about half the time. It's just a lot.
The minor details
I realize that AS is technically not an autoimmune disease – I've gone into depth about that here; it is more immune-mediated — but autoimmune is a word most people understand to be related to the immune system attacking itself.
The etymology for AS is not entirely clear, so summarizing it like that that works for me when talking to people who generally have no idea about rheumatological stuff.
The goal for me is to provide accessible information, give some context, not downplay my own situation, and not turn the conversation into me trying to make someone feel better about my own suffering.
I just want people to empathize, then move on
That said, there's nothing worse than feeling like I'm throwing a pity party, so I try to keep the conversation from going down a dark hole. For one, I think having a chronic illness means always worrying you're being "too much," or complaining. Two, I don't want people to see me as frail or fragile or in need of sympathy. I just want people say, "Damn, that sucks. I hope you're getting the care you need. If I can help, let me know."
I know it's simple and idealistic, but it's so true. I'd rather someone meet me where I'm at, validate that it sucks, and treat me like a person going through something rather than a weakling or someone who needs to be coddled.
Has changing your diet helped manage your pain and flares?