flexibeast.space - gemlog - 2020-12-17

Having cancer compared to having chronic fatigue

i've had cancer, but don't call myself a ‘cancer survivor’. It was testicular cancer; i had an orchidectomy[a], followed by a single round of chemotherapy. That was several years ago.

A couple of decades ago i developed Chronic Fatigue Syndrome (CFS). i went through years of tests: blood tests, urine tests, faecal tests, MRIs. The only things that showed up regularly were low iron and B12 levels. At first the assumption was that the issue was me being vegan, but despite iron and B12 supplements, and eventually returning to being an omnivore, the CFS has persisted (as have the low iron and B12 levels).

Compared to having CFS, cancer had a relatively minimal impact on my life. Due to the CFS, i hadn't been working for several years by the time i got cancer[b]. Being blessed to live in a country with a reasonable healthcare system, i didn't have to fight various bureaucracies in order to get treatment, nor did that treatment leave me out-of-pocket. From memory, the entire process from diagnosis-to-surgery-to-chemo was perhaps a few months at most (it was only a few weeks between diagnosis and surgery). i couldn't distinguish any post-treatment nausea and fatigue from the CFS-related nausea and fatigue i'd already been experiencing for years. So i don't call myself a ‘cancer survivor’ because there are so many people for whom cancer has had, or continues to have, a far more significant impact on their life.

What i found interesting, though, was the substantial difference between attitudes towards having cancer compared to having CFS. Mentioning that i had cancer elicited levels of sympathy and understanding much greater than i'd ever experienced as a result of mentioning that i have CFS. In one sense, this wasn't surprising, given that:

Still, the contrast was stark. Imagine if people with cancer, or recovering from cancer, were told that they should “just stop being lazy” and to “just push through it” when they felt fatigued and exhausted. Imagine how they might feel when they indeed put substantial mental effort into pushing themselves harder, still can't manage to “do an adequate amount”, and are then told that they're just imagining or making up their difficulties, and that the problem is their lack of willpower. Imagine how their physical health would be affected by being expected to constantly push themselves beyond their limits, and how their mental health would be affected by being told that failing to improve at an ‘adequate’ rate would show that the only problem was their poor attitude.

Cancer and CFS can both be debilitating; both can have a severe ongoing impact on a person's daily life. If you genuinely want to be supportive of someone with either, try to do so not with hubris, but with humility and an openness to learning.

🏷 health,sociology


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[a] As a trans woman who experiences body dysphoria, i would have been fine with a double orchidectomy, but the surgeons decided against it.

[b] i spent a number of years trying to work despite having CFS; the lack of predictability regarding when i might have (relatively) good days and bad days made it too difficult to maintain, and i ended up being financially supported by partners.