The 5 Most Common Reactions I Get When I Tell Someone I Have Arthritis
Because ankylosing spondylitis (AS) is invisible, every new person I meet is unaware that I have a disability. Often, I keep this painful little secret to myself to avoid uncomfortable conversations. However, after knowing someone for long enough, there comes a time to spice up the conversation by casually mentioning that my spine is fusing together. Here are the 5 most common reactions I get when I tell someone I have AS:
1. “Oh, my grandmother/grandfather has arthritis!”
To chronic illness outsiders, the word “arthritis” evokes images of achy hands or hips. Everyone knows someone — usually a grandparent — who has arthritis. The problem is that there are over 100 types of arthritis that vary greatly. The arthritis that most people “know” is osteoarthritis, the most common form in the elderly population. It is not an autoimmune disease, but rather occurs when cartilage between joints wears away over time. AS is an autoimmune disease that causes joint inflammation and fusion. Of course, no type of arthritis is “worse” than another (I’ve only tried out one so far, anyway!), but it’s difficult when people believe “arthritis” is a universal experience and compare me to their grandparents.
2. “You’re too young to have arthritis!”
This goes hand-in-hand with the first reaction and the common misconception that only grandparents can join the Arthritis Club. I’m not sure what the point of saying this is. Am I supposed to say, “You’re right! I am too young to have arthritis! I hereby choose to no longer have arthritis!”? The most common age of onset for AS is the late teens and early twenties, so at 21 years old, I’m not the anomaly.
3. “But… aren’t you an athlete?”
This one usually comes with a very perplexed facial expression. And, yes, I can see how it could be confusing, but just because I figure skate and exercise, doesn’t mean I’m not disabled or in pain. I actually have to exercise to reduce my pain and slow the progression of the disease. It’s time to break the binaries of athlete and non-athlete and able-bodied and disabled — there is crossover and I’m proof.
4. “Are they going to cure you?”
The answer is no. I will be on treatment for AS for the rest of my life, but there is no “cure.” It is frustrating to get this reaction because it shows me that the person doesn’t acknowledge the “chronic” in “chronic illness.” I want people to view AS as an important part of me, rather than something that must be “fixed” as soon as possible to make me “normal.” My disease isn’t going away, so please understand and accept that.
5. “Wow, thanks for letting me know, I want to learn more about it!”
Finally, I present to you the rarest reaction of all — acceptance and understanding. For all of the negative reactions I receive, I also get some wonderful, empathetic, and respectful reactions. I appreciate it when people ask follow-up questions about AS and genuinely listen to my responses — it shows that they’re willing to learn about my disease and accept it, rather than making assumptions about arthritis and dismissing me.
Bonus Reaction: “I have arthritis in my pinky sometimes!”, as stated by someone once after I told them the reason I was struggling to walk was because I have AS.
Revealing that I have AS takes courage because I never know what reaction I’m going to get. To everyone, chronically ill or not, please be aware of the misconceptions about arthritis and the implications of your reaction!
Do you use the word disability to describe your AS?