When I was ten, my life centered around swimming, tap and ballet dancing, running with no particular purpose, and inventing dances to Grease songs on my trampoline. I was a living excess of energy, my skin bursting with the vitality that flowed thick and fast through my blood.
So in January of 2009, when I caught a flu-like virus, I spent a day wallowing in self-pity before bouncing back and heading off to school the next day. But something was wrong; I felt sick – a grueling sickness that clung to me constantly — and my legs tired after a single lap of the playground. My head ached, and my muscles felt like elastic bands that had been stretched beyond their limits. I was not Tigger anymore, I was Eeyore, and no one could see why.
I had no bruises or sprains, no broken limbs with casts that could be signed in fluorescent markers. Each doctor I saw pressed a stethoscope to my heart and pronounced me medically healthy, even though I knew they couldn’t hear the agony inside of me, the silent decay of all I had been. It was a year later that a diagnosis was finally typed onto my medical files — Myalgic Encephalopathy, or ‘M.E.’ — also known as ‘Chronic Fatigue Syndrome.’ Sufferers felt extreme exhaustion, pains, sickness, sensitivity to light and sound, and sometimes even fainting spells, extreme weight changes, insomnia, and the inability to feed themselves. No one knew why it happened or how to help it. It was like a glitch in the system, with no ‘Control-Alt-Delete’ to save the day.
By this time I was struggling to walk, let alone attend school. It was by July 2010, shortly before my twelfth birthday, that I had my final shred of independence snatched. I could no longer lift my head far off the pillow. I watched endless seasons of Friends and The Big Bang Theory and wondered why Chandler didn’t need to sit down when he’d been walking around, or why Sheldon was not tired when he had been standing up for at least five minutes. I lay flat day after day, even on Christmas, when tinsel was tied around the headboard of my electronic bed.
Being horizontal had its positives too; I never had to get dressed, or wake up early. I never had to publicly live through my thirteen-year-old phases, and I could watch every episode of Desperate Housewives in one bout. I made colorful chains from the plastic straw collection that gathered in my room, and on one winter-y morning I made a snowman from a bucket of snow my friend had collected and brought inside.
Yet, I soon forgot the texture of rain, and couldn’t remember how it felt to walk along pebbles or navigate the bustling school corridors. Ordinary sensations became romanticized in my mind. My cluster of friends slowly unravelled and the ones who stayed could rarely visit. I began to use American slang without realizing, because the television was the voice I heard most often. Everything hurt, still. Worse, people couldn’t see what was wrong, and all around me was doubt that this mysterious ‘M.E.’ even existed. In the M.E community, it is common knowledge that your mental state will be put under a microscope, because unlike diabetes or cancer, M.E is a last resort diagnosis, an illness given to those who puzzle the specialists.
In January of 2012, I began to walk with a zimmer-frame, then graduated to a hiking-turned-walking stick in august. The stick was a present on my fourteenth birthday from my physiotherapist, and I named it “Steve.”
Now, at fifteen, I walk short distances with ease. The sickness still clings to me with the same strength as always, but the exhaustion is lifting, and the pains are minimal. I am fortunate enough to attend school; my body is lucky.
The list of those who have died from M.E is rising – young people, who could no longer stand to be touched, open their eyes or even lift a finger. M.E. Awareness Day, on May 12th, is crucial because people do not know understand the effects of this condition, nor the difficulty that sufferers face trying to be believed in their daily lives. The stigma around its existence must be stopped, and I hope that even by reading this, the awareness can start to spread.
Poppy is fifteen and lives in England with 3 cats who hate her. She once wrote a poem about a frog crying but hopes her writing has improved since. Her tumblr is agiraffeisaclownonstilts.tumblr.com and she’s always happy to discuss feminism or huskies.