I have to preface this text by saying: I strongly object to narratives like “Everything happens for a reason” or that having one’s life destroyed by a chronic illness “teaches you something”. That is toxic positivity and serves only to ease the discomfort of healthy people around chronic illness and suffering.
I am more aligned with the character of Marcus Cole from the TV series Babylon 5, who said:
“I used to think it was awful that life was so unfair. Then I thought, wouldn’t it be much worse if life were fair, and all the terrible things that happen to us come because we actually deserve them? So, now I take great comfort in the general hostility and unfairness of the universe.”
Sometimes bad things just happen.
So, while I did not consciously try to “find meaning in being chronically ill”, I am a scientist. I have always been intensely curious about everything and I can’t help it. I analyze events, situations, and myself. Getting myalgic encephalomyelitis raised the question: “Who am I when everything that made me ‘me’ is stripped away?”
Before I continue, I want to acknowledge that what follows works for me because I retain the ability to talk, write, move, sit, and tolerate some light (all within strict boundaries). Once the illness strips those abilities from a person and they are entombed in a dark bedroom, I do not know how much of the core identity that I have retained would be left.
Before I got sick, I used to describe myself as: physicist, university lecturer, mountaineer, and runner.
“What do you do for work?” – “I am a research scientist and teach physics at a university.”
“What do you do in your free time?” – “I climb mountains and run trails.”
That’s usually how a conversation goes, and all those things that we list are activities, or they are labels and titles printed on our degree certificates and work contracts.
Soon after I realized that I likely won’t get back to doing any of the above any time soon, or ever again, I started wondering: “What was it about these activities that gave me joy and purpose?” And that made me realize: deep down, I am still me.
About a year into my illness, my GP and I were going over some bloodwork, and for some of the values, the ranges were divided into: low – normal – target value for athletes. He pointed out that my value was in the latter range. I must have said something like: “Well, that hardly matters now,” because he said: “For me, you are still an athlete.” As he often does, he got me even before I got myself. Because yes, deep down, I also still see myself as an athlete. I cannot do the activities anymore that an athlete does, but the attributes—discipline, a structured approach to movement (or activities in general), awareness of the importance of rest, a good sense of the body, efficient use of my muscles—are still there, and they help me with my pacing.
I am also still a scientist. What drew me to physics was wanting to understand how the universe works. Physics was the obvious choice, but, ultimately, I don’t care what aspect of the world I am trying to understand. Even before I got sick, I enjoyed birdwatching. Well, not just watching, but observing and registering the species I saw on the citizen science platform ornitho(.ch/.de/.at). In the past years, I have spent so many hours observing the house sparrows in front of my bedroom window that I sometimes joke about writing another dissertation, one titled: “Social structure of house sparrows in their natural habitat.” The observational part of the thesis would be ready.
And what gave me joy from teaching was seeing other people expand their knowledge. Again, ultimately, I don’t care what that knowledge is. So, by talking to healthy people about myalgic encephalomyelitis, by advising the recently diagnosed about pacing, or by encouraging my husband to enroll in that field ornithology course, I still have that. I still contribute to the learning of other people.
I may not work as a researcher anymore. But I am still a scientist.
I may not climb mountains anymore. But I still identify as an athlete.
I may not lecture physics anymore. But I still teach.