What do you feel is the biggest misconception about axSpa?
AxSpa is an invisible illness, which means others never really get the full picture of what’s actually happening. What do you feel is the biggest misconception about axSpa?
That it s just a choice. It's just slovenly laziness.
That it can’t hurt as bad as I say it does
Having others believe in your pain can be really hard. If it's bad, it's bad. And those words should be enough. -Latoya (Team Member)
That it's not as bad as we sometimes make it seem because we are not dying or complaining every day. When in fact our baseline is bad, and anything that comes daily is either baseline or worse. So somedays we are just able to cope better than others.
That is a very interesting observation. Coping with a chronic illness becomes incorporated into normal, everyday living. Humans can adjust to so much, but that doesn't mean we aren't still in pain. Here's to many days that you can cope well! Warmly, Kathy (Team member)
I find that not so many people have heard and know about AS and it's many complications. I have AS but rarely bother to mention it now, unlike a friend who has MS - people are much mote likely to offer understanding and support. I'm actually under observation (just mri atm but a lumber puncture threatened eeeck - not keen at all) from a neurologist for suspected MS so if I do have that too it will be (devastating) interesting too see how differently people react.
Thanks for sharing your interesting perspective. It is hard to receive the level of support needed when coping with an invisible illness. Here's an interesting article where our health leader writes,"Living with invisible illness in a society that only wants to see the highlight reel will always be a challenge." All the best, Kathy (Team member)
