An Open Letter to Clinicians on Long Covid Brain Fog and Fatigue

I wish my doctor had time to plug in to what's really bothering me.

Dear Doctor: Can we talk about how my illness makes me feel without you giving me a pill or sending me to a specialist? I wish I could explain how important this is to me, but we only have 15 minutes, sometimes less. Here's what I would say if you had time. In fact, this is what I said when I played SPIKE! with my peers. Long COVID makes me feel like someone lit a match and it caused a fire in the forest. (The forest is a metaphor for my body.) It is completely "inflamed", making it nearly impossible for me to how to manage my life. I don't really care who lit the fire. That was years ago now. It's almost beside the point. What is central to my life is the fire. The inflammation. I can't predict how my symptoms will change and how they will make my body feel. On a stellar day, I may work for six hours, but on a high-flame day, my joints ache, I get a migraine or allergies kick in and I have limited energy. The shortness of breath is scary. These little fires and putting them out—that's where I need your help—now—while I wait weeks to see an immunologist or a rheumatologist or allergist. What can you do for me, doc? I'd like to partner with you to figure this out. Signed, Help Me Win the Chronic Illness Game