Invisible

M.E. feels like an invisible illness in more ways than one. Firstly and obviously, there are no physical markers, no scars, no splints, nothing that announces to you, "I am unwell." I know I should be grateful for that, but without those physical markers I am less likely to be believed. People tend to believe what they can see. And when you have an illness that people can't see, they tend to dismiss it as not that bad or all in your head. The one and only time I went to the emergency department during a crash, the doctor on duty suggested that I was imagining it. That lead to self doubt and to me pushing myself too far because I wanted to test if it was my imagination or not.

Even people who seem to believe me don't always grasp the severity. People have said they had chronic fatigue once too, they had to sleep all weekend after working all week but they got better in a year or 2. I can't fathom working in my condition. Most days I can only get get out of bed to go to the living room, I can't fix my own meals, I need help to get around the house safely. Then on my good days when I'm able to go out with my husband for a little while, people see me and assume they're witnessing my baseline.

The other way that M.E. is an invisible illness is that many of us who have it feel invisible. 20-25% of us are housebound or bedbound. You don't see us. We disappear from our jobs, our friends, our families. It can feel like we have ceased to exist. There are people with this disease that can't handle visual or auditory stimulus, so they can't handle visits or phone calls. We become invisible people with an invisible illness. Maybe that is why there is so little funding and research for M.E. Without allies and advocates people forget that we exist.