Top Tweets for #AliveButNotLiving

My brother, who is my elder by three years, told me a couple of months ago in an email that he and I have nothing in common and that I just “spend my time online all day.” We used to be fairly close and would hang out together with our spouses before I became ill in 2015. So for 11 years, he’s largely been absent from my life. I think this provides a lot of insight into why #pwME get rejected so often by friends and family members. My brother isn’t a mean guy, he just doesn’t understand this illness—and even if he did, I don’t doubt he’d feel the same way regardless. Once you’re not participating in the game of life—you’re on the sidelines for years, decades—your world becomes very small. The truth is that people who have normal lives don’t know what to say to us, what to talk about, how to treat us. All they know is that we’ve been chronically unwell for years and nothing has changed. Also, as humans, we usually give people who are sick the privacy and alone time they need to deal with their sickness. But ME/CFS is different because the sickness just goes on for years and years and years and we really crave connection with the people who once thought we were great, until we got sick. There is no playbook for how to make a person with #ME feel included. It’s such a grossly disabling disease and the ONLY way our lives and relationships will get better is if modern medicine comes up with an approved treatment or treatments for this condition. That is to say, life would improve in every aspect if we could just feel better and become more functional. After all, the point of life is living. With #MECFS, you’re essentially just waiting to die.