I’m actually glad that I didn’t know anyone else with juvenile rheumatoid arthritis (JRA) growing up. I didn’t have access to support groups so I only knew what I knew. Ignorance was bliss. When the internet made it easier to connect with people who had autoimmune diseases, many were a breeding ground for complaining. I’ve avoided most of them because of this. So when I was desperate for support for LC I was extremely reluctant. I found a Facebook group for LC but my real need was an understanding from other endurance athletes. Someone suggested another group that was specific for endurance athletes with long COVID. The validation was impressive. These people were describing my experience, my struggles, my desire to overcome and the devastating frustration in trying to do so. While it’s helped me feel less alone, it not like it unlocks the cure. The message is that even a little connection with the right group can help. Try a few out, do some searching and if you don’t feel good about it, keep looking. Trial and error is the theme of our lives right now.
