Some people just don’t get it. Maybe others try, but the majority don’t.
If you don’t live with a chronic or degenerative disease, it can be hard to wrap your mind around an invisible illness. When you’re not actively sick all the time, it’s easy for people to think you’re exaggerating (yeah, because it’s super cool and fun to be the 25-year-old with arthritis!) or you’re being straight-up lazy.
Here are some of the things people have said to me about ankylosing spondylitis (AS).
- Oh, my grandma has arthritis! That sucks.
- I threw my back out one time. It’ll pass.
- So, do you do yoga?
- I was reading about how meditation can get rid of any disease!
- Oh, wow. So you’ll become a hunchback?
- At least you can walk!
- At least it’s not cancer!
- But medicine can cure it, right?
The painful thing is that when people try to connect with you, most are coming from a place of lovely intentions. However, they don’t realize how insulting and reductive they can actually be in that attempt. If people asked more questions about the disease — rather than pretending they’re experts when they’re clearly not — they’d know that most of what they said is pretty ridiculous.
Not only is ankylosing spondylitis associated with an increased risk of cancer, but also plenty of people can’t walk or move freely because of it. Then again, many of us do practice yoga, but we also need medical intervention and major lifestyle modifications.
The assumption of a cure is another issue. This bothers me because it leaves no room for the experience of living with and managing AS. When someone asks about it, I have to tell them there’s no cure — which makes them react weirdly or feel pity for me — and then I watch them scramble for a retort.
Come on, no one wants to deal with this awkwardness! Just be a normal person and say, “I’m so sorry to hear this. I’d like to learn more.” Or, “How can I best support you?” Or, “Wow, I’m sorry you have to deal with this.” There’s no need to bring up your grandparents or tell us about that time you broke your wrist or that we should try wheatgrass shots.
Sometimes I get defensive. I can’t help it, I’m human. Sometimes I can feel my frustration seeping through.
Usually, I say things like, “AS is a chronic and degenerative disease with no cure, although some people go into remission.” If they press, I’ll say, “It affects my back, yes, but it also affects several other organs, and the rampant inflammation can lead to issues down the line.”
In the end, we can’t expect everyone to understand everything or assume that everyone knows what we know or the pain we go through. When we live between 4 and 10 on the scale of chronic pain, while others simply aren’t on the scale, it’s easy to say we’re in different worlds.
Don’t do any extra emotional labor you don’t want to do. Don’t hold people’s hands if you don’t want to. Share what feels right and walk away. There are many of us out here who do get it. Save your energy for the people who want to see you.
Everyday Health says you should only share your disease with people you’re comfortable with. “Disclosure can be helpful if the relationship is good, and there is trust and empathy,” says Perry Nicassio, PhD, clinical professor of psychiatry at UCLA’s David Geffen School of Medicine. “But it can be harmful if the relationship is poor or conflictual.”
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.