Humans of ME/CFS
Back in 1983, when I was only 13, my mother and I finally realized I was sicker than the doctors were telling me. They sent me home from the hospital telling me my tests were under control and I should be feeling fine. I wasn't feeling fine. My mother complained to the doctors that I still felt sick. She wanted answers and they were providing none. So for 34 years, I've lived my life knowing something was wrong because I had flu-like symptoms and was exhausted. But I pretended I was ok because neither I, nor anyone else, understood what was going on. Standing or sitting up felt horrible so I fell to the floor every hour to lie flat. I would have went crazy if I couldn’t lie flat and this happened on several occasions.
Socializing of any kind were torture and I was unable to keep a job longer than a month. I dropped out of college because I didn’t have enough mental or emotional stamina to get through the harder disciplines, even though my IQ and EQ scores were impressive. I had no stamina. I married, and with great difficulty, had one child. I could never try again. Pain and sickness were always with me, like a silent companion. Pain and depression kept me awake most nights. It felt like no one could possibly understand. Because no one did.
Now there are a lot of us with ME/CFS. Millions understand. But that's little consolation for my entire life. I have learned to look at my sickness in the mirror and say, “Hello.” I do not give it the time and energy it needs to grow into a monstrous size again in my life. I make it small. And when it kicks me, I reply with attention and love to make it smaller. It's a spiritual thing, not feeding the monster. It's the only way to survive.