Masking denial: the lure of agency and merit, through recovery stories, alternative medicine, and mind-body interpretations
[This page is a draft, not a finished article]
Manifestations of Denial
Walter Isaacson, the author of Jobs’ biography, said, “I think he felt if you ignore something you don’t want to exist, you can have magical thinking. It had worked for him in the past and he would regret it.” Sounds right out of lightning process playbook. Fuelled by denial.
anti recovery activists
I’ve seen similar language used in online ME forums that have a lot of people new to the illness and very mild. I think it’s a really hard pill to swallow that it’s so rare to recover, and unfortunately even that kind of language that seems absurd to us might strike a cord with some unfortunately.
Recovery Stories
I wonder if a significant proportion of them are scam accounts. If I was maliciously selling a supplement or a diet course or a brain retraining program, and I had no ethical compass. I’d make fake reddit accounts and make up elaborate recovery stories using my products.
A culture of Hope, or Toxic Positivity?
Accepting you are ill with a poor prognosis is not “negativity” or “doom and gloom”.
Alternative Medicine
The way I see it is alternative medicine is chiefly treatments that haven’t been proven yet. And that does not mean they don’t work, a lot of them do, they just don’t have the evidence base available to be recommended to patients according to medical standards.
Industrialisation of Denial
There is an audacity in some people who recover from ME/CFS in thinking they must have found a magic cure. And then going on and making a living selling “recovery stories” or “brain retraining courses”.
It’s never “I got lucky and I recovered”. It’s always “I’m 100% sure my magic crystals and the fact I took a [insert scam placebo] pill lead to my recovery”.
Yeah definitely. Exact same for me when I felt better. I thought something along the lines of “wow, now that I’ve stopped thinking about my symptoms I feel a lot better”. Obviously, it was the other way around (and it didn’t last long…)
The way I make sense of it is that humans always seem to have to find a reason for why they got better from a disease. People have claimed praying to deity cured them, or that taking a placebo drug did. If you go on any of the long covid communities who contain a lot of new people, the majority of posts and comments are people claiming they recovered from the most random things, from carnivore diets to hypnosis.
Personally when I was suffering from health problems (before they were diagnosed as ME) I had a period of two months where my symptoms nearly went away. I was personally convinced my symptoms went away because I stopped thinking about them and tracking them, which I know realise is absurd.
Anyways, a couple hundred stories of people recovering from a sham course that promises “recovery” done by tens of thousands, is hardly suprising at all. I really don’t doubt that some of these people genuinely had ME and recovered. Just that a large dose of confirmation bias made them “blame” their recovery on the LP. Then there is the “sunk cost fallacy” that people will be more likely to say something helped them given they paid 1000£ to do it.
Unproven Treatments
It really does feel like a cult/pyramid scheme in some ways.
They are saying to recover you need to do more and stop thinking about your symptoms? Everyone who recovers will do more, since they aren’t functionally limited anymore, and anyone who recovered won’t think about the symptoms anymore because they are gone. The whole thing is an elementary confliction of causation and correlation.
Usually, the more conditions it “cures”, the more scammy it sounds is a decent rule. Especially if the conditions are vague and without known treatments.