"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 actually don't respond because I'm so shocked when people say something like that. I believe that people mean well when they say that and don't realize it can be insulting. BUT, what I want to say is a different story all together.
I think a lot of people genuinely don’t realize how their words can comes across. There can be a big gap between intention and impact sometimes. And I can only imagine what you would actually choose to say out loud in those moments. Sometimes you just have to pick your battles and move on. -Latoya (Team Member)
It’s a minefield because every single day when I wake up I feel like I’ve been hit by an express train.
The first thing I have to do is mentally get over that feeling of “Here we go again”.
I seldom share my struggles with othersThanks for sharing your experience. Do you have a morning routine that helps you get going? One of our health leaders describes her morning in this article. Warmly, Kathy (Team member)
I try not to let people know. I keep a smile and positive attitude.
That takes a lot of effort to keep up a positive front, especially when you’re dealing with something so draining underneath it all. I’m curious, what makes you choose to keep it mostly to yourself instead of letting people see when you’re struggling? Have you had any negative experiences in the past when you did open up about your condition and you didn't get the response or support you needed? -Latoya (Team Member) thank you for asking. The reason I keep a lot to myself is because I don’t want to appear like I expect pity from others, especially because this disease is invisible. Since I’m pretty much in constant pain, I don’t want to sound like a broken record by constantly complaining about my pain and suffering.
Well good for me!!
Living with an invisible illness like AS can be so frustrating because a little support would be so helpful. Yet comments like "You don't look sick" are so dismissive. I hope you have a few people in your life who understand what you are living with. All the best, Kathy (Team member)
