machado: we need to stop blaming people for their disease
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people who are made to believe that they caused their illness are less likely to seek care.
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“if you are reading this, i am dead.”
this was the first line of a post that i came across on linkedin this week. it was the account of a woman who had had cholangiocarcinoma, also known as bile duct cancer. a rare cancer, cholangiocarcinoma has a poor prognosis because symptoms often don’t appear until it has already spread to other parts of the body. there is also no known cause, although according to mayo clinic, possible risk factors include chronic liver disease, a liver parasite, age, smoking, diabetes and inherited conditions, such as cystic fibrosis.
in other words, it’s not much more than really crappy luck that puts you at risk for developing this killer disease — so basically, everyone is in danger. and yet, in her note, published by someone else, after she heartbreakingly describes her life as being filled with joy and love and purpose — a life that she “loved” (the caps were hers) with a “beloved fur baby” and paul (not his real name), who was clearly her everything and who she wished would, “live a good life, because he deserved it” — she felt the need to add that her disease was not her fault.
i wondered who it was that put that thought in her head — they deserve a punch in the nose. i know nothing about her, but the comment reminded me of all the silly — no, stupid — things that people have thoughtlessly said to me and others living with an illness. like the misguided “friend” who, after hearing about my leukemia diagnosis, commented that the plastic containers i used to store food were carcinogenic, and the father-in-law of a neighbour with lung cancer who asked if he smoked, and the colleague whose fitness-trainer sister connected his skin cancer to not wearing sunblock. blame and the resulting guilt and regret can stick to you — even as you face death, apparently.
and it’s not just cancer. there are a whole swath of health conditions that come with an excruciating dose of misplaced blame from the outside world. obesity, which is often connected with laziness; hpv, tied to having too much sex; and lung cancer, linked to smoking, made it on live science’s top 10 list of the most stigmatized health conditions. according to healthline, when it comes to health issues that attract stigma, shame and blame, mental illness is also right up there, particularly depression — which is perceived as a result of a lack of willpower and a need for sympathy.
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as if people choose disease.
what’s worse are the repercussions of placing blame. research has found that people who feel at fault for their illness suffer psychological harm, tend to avoid seeking a diagnosis and treatment, and lose relationships and jobs. all of this has wider implications, contributing to things like quality of life, emotional health, and most importantly, how it all ends.
but it’s not always ignorance and misinformation that drive hurtful shaming and blaming. there’s also fear. after all, if there is a reason someone has gotten sick — they didn’t sleep enough, drank too much wine, or didn’t exercise — it makes us feel better. it helps us gloss over the fact that it could easily have been us who got the diagnosis, and us struggling to figure out the future — if there was one.
besides, people who are sick or not completely well do a bang-up job of feeling guilty all on their own, thank you very much. the mighty, an online community built on personal health stories, used reader insights to narrow down all the ways illness makes you feel bad to nine things, including guilt about how your illness affects your partner, feeling less-than because your illness means that you can’t work and contribute financially to your family and the perception you are a burden. sounds like a blast, doesn’t it?
there’s nothing about illness that’s easy, and being made to feel like you are somehow to blame just piles useless baggage onto shoulders already weighed down and overwhelmed. so why don’t we just stop doing that. let’s make it so that when people who are facing health issues — whether it be obesity or mental health or cancer — have their final word, not a single letter is wasted on clearing themselves of hurtful blame. instead, it’s a moment to celebrate all that’s good in their lives, find joy in memories and thank those who loved them. as it absolutely should be.
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lisa machado is the executive producer of advocacy & better health. she can be reached at lmachado@postmedia.com.
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