I was diagnosed with Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) in Sept of 2021. It started after a year long battle with Mono, which I got in early 2019. I saw doctors and was told it was normal for me to still be down and out, even after more than half a year. But I never fully recovered, and I accepted my new fatigue as normal. I let myself be told it was my depression, my mental illness, even though I was skeptical. It felt... different. It wasn't until I was experiencing Post Exertional Malaise (PEM) more and more frequently that I started to worry. It was my therapist who helped me to advocate for myself, to fight against the stigmas that come with being mentally ill. It was a long time advocating and after many specialists and tests, I was diagnosed. I later learned the Epstein Barr Virus, which causes Mono, has long been connected to ME/CFS.
I wish I had known earlier, I wish I hadn't pushed so hard in school. I wish I could go back to college, that I could be working toward a degree. I wish I could still run up stairs, go on long walks, and dance around the house without paying for it later. I wish I was well enough to do those things at all, when it's bad. It's been bad for weeks now, my longest crash, and I'm scared. Scared I've officially gone from mild to moderate. Scared I won't go back.
Today, May 12, is World ME day. I hope posts like mine can bring awareness to this disease.
