Humans of ME/CFS
Imagine having a hangover every day of your life, for the rest of your life, without the fun of a “night before.” Some days you can’t move, others see you on intimate terms with the toilet bowl, but some have you push through the pain. You have little to no control over which kind of hangover you’ll wake up with, you only know there’ll be one.
That’s been my life with CFS for the past 17 years.
My CFS kicked in after years of “growing pains,” viruses and finally, at age 14, a bout of Rubella. It was 1998 when my GP diagnosed me. I cried. By that stage, I was so ill I was hoping for terminal cancer.
It wasn’t long before I was bedridden and had to drop out of high school. I soon learnt who my real friends were. Not even family were supportive, and my parents put up with a lot of “advice” from ignorant people who insisted they knew better than the doctors treating me. To this day, total strangers will tell me how to be cured—“Vitamin B,” “Yoga,” “See a shrink”—and almost everyone has a friend-of-a-friend “cured” from CFS. Having a disease so poorly researched means everyone has an opinion on it.
Seventeen years on, I still struggle with CFS. I’m no longer bedridden, but I am housebound a lot. I’ve traveled overseas, been in a band, completed a diploma and begun my own business, but I have to take life at a snail’s pace. It’s frustrating—incomprehensible, for many—and can leave you feeling you are nothing but an illness. You find ways to cope, but it is often life less than half-lived.
There is a thought that when someone is ill for so long, it must be their own fault. That seems to be the common thought with CFS. There is no “Triumph over Adversity” story for CFS. Perhaps if it were more visible—or terminal—then it’d be taken seriously and given the funding it needs for a cure. Until then, though, we only have our stories to share to increase awareness.