“The Sexist Truth about Contested Illnesses” - podcast with Michael VanElzakker

https://twitter.com/user/status/1063095899944112129




transcript available here:

 

Thanks, glad there is a transcript.

 

What kills me in this is how few of those there are. It's not as if there were 500 such diseases and giving in to any one of them would open up floodgates of undeserving sick overwhelming medical services.

There are, what, a dozen at most? And that list includes diseases that have reached the evidence burden but discrimination continues to be the norm, as with POTS, chronic migraines and EDS. Every time research pans out and ends up confirming patient experience.

And is there even precedent for a disease with an objective evidence base describing a physiological disease that turned out to be all in mistake and was downgraded? I doubt it. Meanwhile the opposite is true in that many traditionally discriminated diseases have gained acceptance and only psychosomatic pipe dreams (like neurasthenia) have been downgraded. Yet Wessely likes to point this out even though it makes the opposite point, that the only accepted diagnoses to have been downgraded have been psychosomatic models.

 

In the case of our illness, men get just as disabled with it as women. If that makes it sexist, then I don’t understand what the word means.

 

Predominantly female professions are paid less than predominantly male professions of equal work. This is sexist because women are being paid less than men. That men working in the predominantly female professions are as badly paid as women does not mean that gender is not the basis of the pay gap.

The suggestion is surely that people with ME are treated less well than comparable diseases because it effects more women than men.

I suspect further that men with ME are taken more seriously, get faster diagnosis, etc than woman with ME, though I have no concrete evidence for this.

 

More women have been diagnosed with it especially in the early years. This lead to the neurasthenia, hysteria, etc explanations.

 

If I recall correctly, journalist Brian Vastag wrote that when he was diagnosed with ME, he was told it's a woman's disease.

My apologies to Brian Vastag if I've gotten this wrong.

Yes, more women have ME than men, but given the estimate of 17 to 30 million world-wide, that means there are a lot of men suffering from ME.

 

As a man with ME that has not been my experience at all. I suspect it’s more down to how good your GP is as to how how seriously you get taken, which would be a mostly random factor.

However I also suspect it’s something that’s impossible to ever ‘prove’.

 

I think it might have even more stigma in men because it is seen as a disease of "neurotic women". The BPS theory of an infection that goes but we think that moving is hurting too much so we do less which leads into a vicious cycle of deconditioning is bad enough for women but for men to do such a thing goes right against the "real man" stereotype.

Alongside the sexist narrative of women being unable to do what men can is one where men are strong breadwinners.

 

OK, that makes sense.

 

I believe you. And I would never try to invalidate your experience.

But there's a difference between the experience of any individual man or woman with ME, which is one kind of discussion, and the overall statistics for men vs. women (and nonbinary? gender fluid? - I don't want to leave anyone out).

I think it's important to separate the discussion of a systemic issue (like sexism or racism) from the discussion of what happens to us as individuals (doctors often treat ME patients badly, period). These topics are related but they are different topics.

I'm sure there are men with ME out there who have been treated worse than I, a woman patient. No question!

But I'm pretty sure there certain types of comments that I get which are different from the comments that men get.

For example, early in my illness, before any diagnosis, I had an appointment with a new doctor. After telling her my symptoms she saw my recent tubal ligation in my chart. Then she asked me whether maybe I was feeling regret over my choice not to have children.

It's hard to imagine a doctor asking a man whether symptoms like dizziness, nausea, feeling short of breath, exhaustion, etc, could be caused by his regret over a recent vasectomy.

See this post from Jan 2018 for more:

https://www.s4me.info/threads/jennifer-brea-in-boston-globe-december-27-2017.1684/#post-30559

 

It’s easy to imagine a dr asking a man if his symptoms could be caused by him having to give up his job though. It’s all the same stuff just slightly different things they focus the questions on.

If there’s ever any evidence for men with ME being treated better than women with ME then I will happily admit to being wrong but I haven’t seen any yet. Frankly I’d be surprised.

Eta last reply on this one

 

From my experience the framing is different but it's a distinction without a difference. I wasn't told I was imagining things. I was told there was probably nothing. Which is just 2 different ways of saying the same thing.

It's very slightly less insulting, but the outcome is the same. I was told a few times I just needed to pull myself together, which is also largely the same thing.

Overall I'd rate the effort dedicated to my case on a 1-10 scale as: 0. Just plain 0. It was a massive, systemic, thorough and insulting failure. But nobody rolled their eyes while treating me like crap, so I guess I got that going for me.