I thought I really didn’t have time to read this article. Then I started, and I didn’t NOT have time to read it. I had an autoimmune liver disease, pretty rare, and it was slow starting up (about a year, or maybe more). But when you tell people “I have a liver disease,” you get “The Look” (like, hey, you drank yourself sick? too bad), so I learned to say I had a rare autoimmune liver disease called Primary Sclerosing Cholangitis (PSC). Then all was quiet. I’d get, “but you don’t look sick” and that’s how I found Christine Miserandino and the Spoon Theory. Eventually I had a liver transplant, but that took 11 years, getting sicker and spending more time in the hospital and nearly bleeding to death, and then having 25 specialized endoscopies, then having complications after one of those and spending 2 weeks in ICU not being able to breathe. But then I got the liver transplant 3–1/2 years ago. I went to the transplant center where that took place (Cleveland) and was told I’m doing unusually well! Then the nurse added, “But we can’t cure the PSC, of course.” So it’s silent now. And I still get, “But you look really good.” Being sick for all that time basically took away my life pre-illness. Completely. I’m having to make things up as I go.

Thank you for sharing these stories. These really are invisible diseases but people suffer so much, every single day, sometimes without even a diagnosis. While people tell them, “you look good.” It made me feel somewhat guilty, but I wanted to know. I have a friend who is trying to get a diagnosis for something likely autoimmune — even went to Mayo Clinic for a week. Next month she’s going to Cleveland Clinic. But it’s hard for her to feel hopeful anymore. She suffers daily.