What are the most challenging aspects of living with an invisible illness?
Living with axSpa presents unique challenges that often go unnoticed by those around us. This discussion forum is dedicated to exploring the complexities of managing a condition that isn't always visible to others. Share your experiences, frustrations, and coping strategies with our supportive community.
Everyone has great advice for me and that I "should do this or that", but when the pain just kills movement, the challenge is too great. Then people just figure I am lazy and it is easier to ignore me. When I was still actively teaching my principal came in from the parking lot noting I was parked in a handicapped space. Not seeing or feeling my physical impairment, she remarked, "Oh I see, you are just taking advantage of what the public has to offer."
People don't understand invisible diseases and nobody wants to hear the explanations, as they sound like complaints.
I am grateful for mail-in voting and Instacart.,
That is so frustrating.
Those not affected by axSpA just don't get it. (Like the saying goes "You just don't get it till you get it".)
I'm with you on mail-in voting and Instacart!
All my best, Doreen (Team Member)
How quickly a flair can change your plans especially fatigue.
Having a flare show up out of nowhere is frustrating, especially if you've made plans. Pushing through the pain and fatigue is quite challenging. This disease can certainly derail you from living life. I hope that your flares are managed adequately so you can move forward through your days with less pain and fatigue. Rebecca (team member)
Convincing friends and family that there are many times I can't do those things that had been planned due to back pain and fatigue.
It's so hard to explain the pain, fatigue, and debility associated with spondyloarthritis. Having to cancel plans set up days or months prior can be difficult for those members of your circle of family and friends to understand. What are some ways you've dealt with this? Knowing some activities are just impossible for you, how do you continue to join in but keep activities low-key enough to enjoy? Many times it's impossible. Hoping you find adequate ways to help others understand this chronic illness and its limitations. Rebecca (team member)
