Saturday, June 30, 2018

Sixth Annual Turkey Awards: PCOS Isn't a Real Disease

It's that time again ─ time for HELLO MIDWIFE's Annual Turkey Awards. Our sixth annual Turkey Award, to be exact!

These are the awards I hand out for fat-phobic treatment of people of size from care providers, biased attitudes or studies from researchers, or highlighting troubling trends in the care of fat pregnant women these days.

In past years, we've talked about fat-phobic care providers, scare-mongering and shaming tactics, jumping to conclusions about risksscorched earth tactics, and prenatal weight gain extremism,

This year I have spent quite a few posts focusing on treatments for PolyCystic Ovarian Syndrome (PCOS), and so this year I thought it fitting that the Turkey Awards also focus on PCOS.

PCOS: Real, or Just Another Excuse for Being Fat?

Despite all the research on PCOS, it's shocking that there are still care providers and others who don't believe that PCOS is a "real" diagnosis ─ that's it's just another ploy by obese people to make excuses for being fat. For example:
  • There's this entry over at "First Do No Harm," where the doctor tells a woman recently diagnosed with PCOS (by another doctor) that “PCOS isn’t a real disease, it’s been made up by fat women”
  • Or the spokesperson for a major medical organization who said, "The prevalence of PCOS appears to be rising because of the current epidemic of obesity"
Look, care providers. I get that you look at most women with PCOS and see lots of obesity. Yup, there's a strong correlation between obesity and PCOS. But not all fat women have PCOS. And some thin women have PCOS. It is doubtful that there is a one-to-one causal association here.

PCOS goes far beyond questions of fatness. It is an underlying metabolic and hormonal disorder that wreaks havoc in the body. It is indeed a REAL condition and it's NOT just a side effect of being fat.

If anything, PCOS probably predisposes to weight gain. That's likely why so many women with PCOS are fat.

But it doesn't mean that being fat causes PCOS.

Nor does it mean that if you just lose a bunch of weight, all symptoms of PCOS will disappear forever. Some people find that it helps, but many people don't.

And it certainly doesn't mean that fat people have invented a bogus disease to make excuses for their fatness or to cover up bad habits that they are just too lazy or stupid to resolve.

PCOS Denial

Why do some care providers refuse to believe that PCOS is real? I keep scratching my head over that one and this is what I come up with.

Some have simply been trained by medical schools to blame every health problem fat people have purely on being fat. Many won't believe anything that fat people say about their habits because they were taught that we are all in denial or lying about our habits.

Some like making assumptions about what fat people "must" eat so they can feel morally smug and superior. After all, their bodies work just fine and stay skinny with moderate habits. If ours are larger, it must be because of excessive habits, not some underlying metabolic difference. All bodies always work exactly alike, right?

Many want an easy answer for the tough symptoms of PCOS, a quick fix without acknowledging the complexity of the condition and its resistance to conventional treatment. Blaming fatness and promoting weight loss as the cure gives a conveniently easy answer without having to look deeper at the fact that many people don't experience a magical cure with weight loss and that most weight loss rebounds with enough time.

Some truly mean well but feel powerless when dealing with PCOS. People don't like to feel powerless, so when they can't provide a quick fix, they often dismiss or minimize symptoms, attribute it to something else, or blame something about us for developing symptoms at all.

Because, you see, if you can blame the victim for their disease, then you don't have to feel bad when you can't instantly cure someone. And then you don't have to admit that body differences go far deeper than we want to acknowledge. Or believe inconvenient truths, like not all bodies are created with a level playing field.

If providers can believe it's our fault, then it conveniently frees them from even needing to TRY to figure it out or cure it. Just blame the victim and their "lack of willingness to change" and move on. Problem solved. No need to agonize over it or feel bad or to admit that you are powerless to fix some things.

Fortunately, awareness has been raised in recent years and most providers these days don't treat PCOS like a figment of the imagination. They know it's a real condition and they truly care about helping us maximize our health and find some answers. There are still some turkeys out there who don't get it, but thankfully, most do.

But even among those who recognize PCOS as a real condition, there are still plenty who think that weight loss is a sure cure for it and that anyone still suffering from symptoms just hasn't tried hard enough (or used the "right" program) to lose the weight.

Despite all the progress we've made on PCOS, it still all comes down to a focus on weight for far too many providers. 

What Women With PCOS Want From a Provider

Women with PCOS want a provider who understands that there IS a real condition called PCOS, and that it's not just tied to "bad" habits or being fat.

We want a provider who gets that there is something different about our underlying metabolism and/or hormones, and that THIS is the primary source of our symptoms, not fatness.

We want a provider who doesn't think we are looking for an excuse for being fat, who will take our symptoms seriously, and who will work with us to find the best treatment plan for our individual circumstances and desires.

We want a provider who understands that while healthy nutritional habits and regular exercise can go a long way towards helping lessen PCOS symptoms, they don't cure anything ─ and often provide only a temporary reprieve. They sure as heck don't make most of us permanently skinny. We want providers who understand that it's far more complex than that.

We want providers who won't just make assumptions about our habits based only on our weight. We want providers who will encourage us to work on healthy habits, but without necessarily focusing on the scale as the main measure of healthy habits. We want providers who understand that healthy habits can still exist in the context of a high BMI and independent of actual weight loss.

Some women with PCOS will be interested in weight loss and some will not. We want providers who are respectful of either choice but who understand that all our issues won't be solved just by losing weight or trying diet "x." If we decide not to pursue weight loss, we want providers who will respect our right to patient autonomy and who will be willing to focus on other modalities of treatment.

Final Thoughts

Providers, believe that PCOS is a REAL condition ─ one that is not created by carelessness, willfulness, ignorance, or bad habits ─ even though we don't fully understand exactly what it is yet or how to fix it.

Stop making weight the center of your focus around PCOS. It is just one facet of this condition. You can discuss weight loss as one of the choices on the spectrum of care, but realize how difficult it is and how the metabolic differences of PCOS works against its success. Don't make weight loss the only tool in your PCOS toolbox, don't harass us about it, and respect our choice if we decide against focusing on it.

Stop blaming the victim, and realize that PCOS is a complex condition that goes beyond simple fixes. Help us experiment to find the treatment modality that fits our circumstances and desires, rather than working from some inflexible formula of what all PCOS patients "should" do.

Work WITH us instead of lecturing AT us. Treat us with dignity and respect, listen to us, and individualize our care according to our wants and needs. Then ─ and only then ─ will we make true progress towards optimal health with PCOS.

*Have you encountered weight bias when trying to get diagnosed with PCOS? Did your providers blame all your symptoms on fatness instead of exploring the possibility of PCOS or other issues? Do your providers remain fixated on weight loss as a "cure" for PCOS to the exclusion of other possible treatments?  What would you like to tell providers about serving women who might have PCOS? Share your stories in the comments section.

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