When I was a mountaineer, I often imagined what might happen if I had a bad accident on the mountain. My worst-case scenario was ending up paraplegic, losing an arm or a leg, shattering my hips, or something like that. And I saw myself “fighting my way back to life”. After all, Stephen Hawking demonstrated that, to do physics, all you need is a working brain. I would fight for access so I could continue teaching in a wheelchair, and I had seen inspirational videos of paraplegic climbers at the climbing gym. I wouldn’t even have to give that up.
That thinking was not only incredibly naïve; it was also ableist. But can you blame me? That is the story society tells. The media are full of people who “fought their way back”: the professional cyclist who suffered a spinal cord injury in an accident and now does wheelchair racing; the double amputee who climbs Everest. In those stories, there seems to be no limit to what disabled people can do.
They “don’t let their disability stop them”. Except most disabilities do stop you, at least in some ways. Not all disabilities limit people to the same extent, and the question of whether someone is disabled by their condition, by society’s failure to accommodate them, or by both deserves its own discussion. But it would not be called a disability if it did not limit a person’s abilities.
Myalgic encephalomyelitis takes this a step further, because the illness punishes effort. A person who can walk only 200 m after a stroke can, with a bit of luck and lots of training, probably extend their range.
A person with myalgic encephalomyelitis who can walk only 200 m because anything more gives them PEM cannot “fight back” or “walk a little more every week”. The 200 m are a fixed upper boundary set by the illness, and trying to move that boundary by force can cause, possibly permanent, deterioration.
Still, the fighter narrative is so ingrained and so pervasive that, as with positivity, many people with myalgic encephalomyelitis feel the need to reassure themselves and society that they are still fighting. “I am in a bad bout of PEM, but I keep fighting!” “I know I will be able to walk again if I fight hard enough!” People who do get better attribute that to their fighter mindset. Conversely, people who do not improve must not be “fighting hard enough”.
But with myalgic encephalomyelitis, what is needed is a quieter, sneakier approach. Think ninja – or, if you play D&D, rogue. Their strengths lie not in raw fighting power or confrontation, but in stealth, creativity, patience, and adaptability. Exactly what is needed with myalgic encephalomyelitis.
I like to think of it as “tricking the illness”. I don’t try to extend my functional capacity by force. I try to find ways to optimize what I can do within it. That is not very spectacular. It doesn’t make for a good “Fighting her way back to life” story. But it is what has kept me stable for almost four years, allowed me to discover new things I can do without risking PEM, and kept me mentally healthy.
I have to add this disclaimer: I speak from a position of privilege. I have lots of support and some remaining physical function to work with. Many people with myalgic encephalomyelitis do not have that.
In any case, you will never hear me call myself a “fighter”. You will not see me outside walking 50 m more every week because I am “fighting my way back to walking”. But that does not mean I have “given up” or am not trying to have at least a semblance of a life within the three to four hours per day that the illness grants me. I am just taking a different path from the one society expects me to take—and not for the first time in my life.