"But You Don't Look Sick?!"
Axial spondyloarthritis, though often invisible to the naked eye, can significantly impact daily life. This forum provides a space to share your encounters with this well-intentioned yet sometimes perplexing inquiry. "But you don't look sick?!" How do you handle it? What emotions does it stir? Have you discovered effective ways to educate others about the hidden facets of axial spondyloarthritis?
Join us in this conversation, connecting with fellow warriors who understand the unique challenges and triumphs of living with this condition. Let's exchange stories, tips, and strategies for gracefully addressing this common but complex question. Together, we can support each other, share insights, and help raise awareness about axial spondyloarthritis—both the seen and unseen aspects. 💪🦴💬
I tell them I'm not sick I'm always in pain and it is very tiring.
That's a very clear way of phrasing it. How do people respond? All the best, Kathy (Team member) then you get the pity face 😒 but it's OK cos we are stronger than that 💪
That look, when you put a handicap placard up in your car when you park. The side eye, stank eye and accusational looks. I feel guilty for doing the right thing. This disease, you look normal....
Now this one hurts... I hate that you have to feel guilty about using your handicap pass when you are indeed someone who needs it, even though your pain isn't apparent to the naked eye. This disease is exhausting enough without feeling guilty for taking care of yourself and you shouldn't feel this way. No matter what, do what's best for you! -Latoya (Team Member) That must be so frustrating. It's human nature to be upset when judged unfairly, even if it is none of their business. You're not the only one who has encountered comments like this. Here's an article written by one of our health leaders when she received an unkind comment from someone working at the Social Security office. I am so sorry you've experienced this too. Warmly, Kathy (Team member)
Looks can be deceiving !
Yes they can! How do you manage daily life with AxSPA when most people wouldn’t even know you’re dealing with it? -Latoya (Team Member)
My response is: "tell you what, let's swap spines and let me know how you get on".
HAHA! That's a good one! This would definitely give people a real perspective on what living with this feels like. -Latoya (Team Member)
