Autism and talking about poor health
In this Lived Experience account, Cos Michael reflects on how her emotional processing of a recent diagnosis of ill-health and her subsequent experience of treatment was influenced by her autism.
I find it very difficult to speak about poor health - there's a sort of embarrassment involved. I think this is because I can't judge how the other person will respond, and I'm the sort of person who doesn't like gushing and the sort of emotional stroking that a lot of people seemed to think is required.
I've recently become involved in a University of Exeter project about breast cancer and autism. I've also been looking through my email correspondence, and found the following email to an acquaintance, from the start of 2022. For context, the recipient is someone who I normally see upstairs at my local Caffe Nero, and ‘Marzano’s’ is another coffee shop near where I live.
“Happy New Year!
I saw in my new year at the Norfolk & Norwich Hospital having a lumpectomy & lymph node biopsy. They diagnosed breast cancer after a mammogram and operated very swiftly. I don’t know whether it was all caught, if it’s spread; or if I just need post op treatment. I’m trying not to think about it, but the stress is making me exhausted.
Sooo - I’m hoping the dressings can come off on Thursday and the wounds have healed, because until they have, I can’t have my first shower of the year.
I’m not in Nero often as it’s crowded and the aircon still doesn’t seem to be working upstairs. If I test COVID positive, I can’t go into the hospital for appts. So I’m going to Marzano’s most days.
That’s me updated – how are you?”
When I read this email back, I wondered; is this a typical way to tell an acquaintance that you have cancer? I've had non-autistic friends tell me about their cancer, but they don't normally put it in the context of where to have coffee. They seem to want to stick to address it as its own topic, whereas I was clearly keen to move away from the subject. I found it very difficult to find the way to introduce the subject, whilst keeping it at arm’s length.
And that's how I treated the cancer as well: as if it was just another thing that had to be fitted in to my schedule. I had one night of laying in my bed feeling terrified, then found myself pushing away the realities, as if it wasn't frightening until and unless I was told differently.
I went into emotional shut-down although I still functioned in my daily life–it was quite a feat of masking. I was masking to others, but I was also hiding myself behind the mask to avoid confronting the enormity of being treated for cancer.
I attended all treatments and hospital visits alone, because having somebody with me would have been one more thing to cope with and because (other than a sister who lives nearby, and who was more frightened than I was) I have no close friends in the area.
I wonder how many other autistic people go through medical procedures alone, either because they are socially isolated, or because they don't know how to cope with having other people with them, and dealing with that other person's solicitude or distress?
(My 2023 mammogram was clear, so all’s well so far).
Learn more about the Autistic Experiences of Breast Cancer research project
This project is run by researchers from the Psychology Department and the Social and Political Sciences, Philosophy and Anthropology Department at the University of Exeter.
