If I could punch ME (Myalgic Encephalomyelitis, also known as “Chronic Fatigue Syndrome”) in the face, I would.
Though I thank God each day that I’m not bed-bound or attached to a respirator like some of my fellow sufferers, this disease that invaded my body a few years ago just sucks. Literally. Sucks my energy. Sucks my memory. Sucks my ability to find words. Sucks away time with family and friends. Sucks my appetite. Sucks my balance.
Sucks, sucks, sucks.
Unfortunately, there is a bias in the medical world against treating ME as an actual, physical problem. Nobody would dare suggest that a cancer patient is “just depressed.” Nobody would insist that MS is “all in your head.” Yet time and time again, people with ME are confronted with these flippancies. Do I deal with depression and anxiety? Yes. Are the very real low-grade fevers, swollen glands and aching joints part of that? No. In fact, I believe that the ME diagnosis I received in 2010 contributed to the emotional and spiritual problems that were beginning to develop. I don’t know a single person who can grapple with a chronic condition, from migraines to back pain to digestive problems, without being impacted emotionally.
I signed this letter a few weeks ago, urging HHS Secretary Sebelius to sever the government’s connection with the Institute of Medicine in “redefining” this disease. Redefinition is something that ME sufferers long for; we would love to be treated with respect and compassion instead of being dismissed. We would love to see money devoted to research. However, this current redefinition plan is suspect. Nobody on the IOM panel is an expert in ME, and several of those attached to the project have a focus in psychology.
We need you, dear friend. Those of us with ME – and all others who deal with “invisible” illnesses like fibromyalgia and lupus – need you. What we face each day is real. The pain is real. We’re not “making this up.” We don’t “just want attention.”
Please, keep your eyes and ears open in the coming months. Stand with us. If you know someone who lives with a chronic condition, find a way to encourage him. Spend time with her. Do what you can to show your support.