PCOS in the Fatosphere

Before I get into the meat and veg of this post, did you see my new mascot, there on the right? That's my new heffalump, created by the rather talented Luke Bamkin. I have got plans to change the whole layout of the blog more and feature this art more prominently, but I wanted to pop my new friend up there straight away, with her shiny, round, fat buttocks. Cute huh?

Tonight I want to talk some more about PCOS and fat acceptance. I suffer PCOS, and for some years have been quite active in the "cysterhood". Finding women out there that knew all the things I was going through was a hugely healing and strengthening process for me, as prior to being welcomed into the cysterhood, I had always felt inadequate and somehow less than other women. Mostly because I didn't fit what was sold to me as normal for a woman physically. Not just in my body shape and size, but because my body didn't do things that other women's bodies seemed to do naturally. And as my fellow cysters know all too well, sometimes our bodies do extra things that other women's bodies do not do.

To start with, it was nightmarish for me to get a diagnosis of what was wrong with me. In hindsight, I first presented to a doctor with PCOS symptoms when I was 12 years old. I was first officially diagnosed an astonishing 20 years later! Can you believe it? For 20 years I went to doctor after doctor after doctor with all of these things that were happening to me, only to be either misdiagnosed or fobbed off.

And of course, the most common response from doctors in that 20 years was "Lose weight." With no explanation of what losing weight would actually do (other than make me thin) or what was wrong with me. I can remember at 19 going to the doctor after having bled heavily and been in pain for 18 months straight and his treatment? "Go and lose some weight and find yourself a bloke, when you're ready to have babies, we'll look at it all."

How this is not grossly negligent, I do not know. But it was indicative of most of the "treatment" that I got over that 20 years. PCOS sufferers often suffer debilitating depression as a result of the vast amounts of hormones flooding their bodies, but can you imagine what this kind of treatment at the hands of the medical profession does to women who already have low self esteem, feel unfeminine and who often live in vast amounts of pain?

However, at 32 years of age, I finally got a diagnosis. With a very good doctor who was, and is, the most sensitive I have ever encountered and I've been her patient ever since. However, her first treatment was to get me losing weight. Being the good girl, I followed her advice, and we tried a LOT of things to get me to lose weight. From food diaries to Metformin to the worst of them all... duramine (legally prescribed speed - EVIL stuff).

I joined a lot of PCOS groups and forums online. I met literally hundreds of amazing women, some of whom I am now lucky to call my dearest friends, all over the world. But the entire culture of "fat is evil" is rampant within the cystersphere, from high profile cysters who have their own boards who promote boot camps and radically restrictive diets, which I believe are projections of their own fat fear and self hatred, to the high promotion of weight loss surgery, diet fads that come and go, and many frightening medications that make cysters very, very sick with their side effects (oh that duramine!)

As per my last post, I did lose weight, a LOT of weight (though not with the duramine, that shit nearly killed me) and guess what? My PCOS symptoms got worse. And I fell apart, emotionally, mentally and physically.

But as hitting rock bottom often is, it was the push I needed to start swimming to the surface in my life. The fabulous GP referred me to a psychologist who specialises in cognitive behavioural therapy. It was the best thing that ever happened to me.

It started with finding some confidence. Not being so hard on myself. Building up the self esteem. I started reaching out to other cysters the way many had reached out to me, because I want to give back and the feeling of seeing a new cyster friend hit that moment of "Oh my God I am NOT a FREAK!" is just wonderful. I started pushing back gently with my GP about the weight loss thing, and amazingly, she has responded positively. I gave up the Metformin (which I will admit, did give me a clockwork cycle if nothing else) and found the fat acceptance movement. I stopped obsessing about food and exercise and my body and focused on feeling good, inside and out. And I feel healthier than ever right now.

I really feel that we cysters are put through so much. To start with our bodies aren't like "normal" women's bodies, and that not only causes us pain and low self esteem, but it worries us as well. Then we go through the whole cycle of doctors telling us we're too fat, lose weight and our troubles will go away which is so often simply not true. Then they shove us through all kinds of invasive, painful and humiliating medical procedures and drugs to try to get us to lose weight. Let alone the ones they foist on us if we want to have babies, which so often just don't work either. Finally they wash their hands of us once we either finish our breeding or decide not to breed. As though the value of our health is only valid when we are breeding. And finally when we do reach menopause, they ignore the fact that it is more likely for us to have traumatic menopause because of the different hormone patterns.

If you're a sufferer of PCOS, leave me a comment, tell me your experiences. Particularly around fat acceptance/discrimination with your PCOS.

I want to connect cysters up within the fatosphere, without all of the fat hatred and the "You must lose weight or you're never going to survive PCOS" schtick. I want to connect up the single cysters, the lesbian cysters, the very young cysters and the older cysters, the cysters who have chosen not to have children or who have reached the end of that fight. I want it to be about who you are as wonderful, strong, resilient women, not about your body shape and breeding abilities.

Most of all, I want cysters to find their self esteem, to learn that they are awesome women and that the healthiest thing you can do is learn to love yourself.

The Myth of Weight Loss

I'm sure you've all heard it before. Every time you have a problem in your life, some well meaning person, be it family, friend, doctor, douchebag on the street tells you to "Lose weight fatty, your life will get better." Or variants thereof. I know I've heard it plenty of times. Over 25 years it's been said to me so many times, it's practically carved into my skin.

Well I did it. Some years ago now, when I was at one of the lowest points of my life, and had been freshly diagnosed with PCOS, I made the decision that I was going to lose weight. I started with swimming, which I do really enjoy. And I lost a little weight straight away and then it settled at a constant level, which was what totally spurred me into a very frightening spiral into insanity.

I had been assured that by losing even as little as 5% of body weight, all the horrible PCOS symptoms would go away. "Cysters" know about the ones I am talking about - all those physical things that make us hate ourselves because we feel ugly. Not to mention the agonising hormonal cycle, that left me in crushing pain each month. So I jumped in with both feet determined to chase all these horrid things away by losing weight.

It started with little compliments. "You're looking good, have you lost some weight?" People who didn't normally speak to me suddenly started asking me what diet I was on, how much exercising I was doing. It was like a drug. I ramped it up from swimming a few days per week, to swimming 5 days per week, and walking every day. I then started to starve myself. All I ate was fruit and salad.

Soon after that, my workplace offered a gym course for overweight staff. I was on a roll, so I joined. Once that started up I found myself exercising a minimum of 4 hours per day. All I talked or thought about was losing weight, how much exercise I was doing. I became one of those boring women who talks about nothing about how fabulous it is to have all that exercise and my diet habits. I stopped socialising with my friends. I made new friends, all of whom never spoke to me before I started losing weight. I told all the fat people I knew "If I can do it, anyone can!" In short, I was a nutcase.

It worked. I lost over 25kg (55lbs) and dropped FIVE dress sizes. Yep, five. People told me I was fabulous and awesome.

But inside, I was dying. I was so miserable. My entire life consisted of the gym/pool and obsessing over what I wasn't allowed to eat. I alienated a lot of my real friends because I was so boring and militant with it all. I hated myself because I couldn't get any thinner than the 25kg I had lost. I swung between manic hyperactivity and crushing depression. The only people around me were people who had only decided to value me because I was thinner. And the worst thing? My PCOS symptoms got WORSE. Yep, the acne, the hair, the painful or non-existent periods, the constant heartburn.

I felt so robbed. I'd worked so hard, I did everything that the "experts" and everyone else told me I should do, and it still didn't work. I was a failure even when I succeeded.

Quite predictably, I had a breakdown. Both physically and emotionally. I couldn't maintain the insane lifestyle I had to adopt to lose any significant weight, nor could I handle not having a life with any depth in it. Everything was superficial and about my body, not about ME. I hit absolute rock bottom and ended up a real mess.

And of course, gained all that weight back and more, which just sended me even deeper into the pit.

At my lowest point, my GP referred me to a psychologist who specialises in cognitive behavioural therapy. Mostly to teach me out of the self loathing and total lack of self esteem spiral I was in. Her first step was to ask both my GP and I to stop weighing me on my visits. I haven't been weighed since. And over the past two or so years, she's been working with me very closely to build my self esteem and self worth up to where it should be. We've worked through it all, from my body hatred to relationships, family, work, you name it.

But she does still push me to lose weight occasionally, but I have the confidence to be able to push back now. I know that losing weight does not solve my problems, and it didn't even make me healthier. I know when I feel at my healthiest and at my best. I am probably at the top end of my weight scale these days (no pun intended) but I seem to have settled to a level that I feel good at and have the most energy. All my bloodwork etc comes back in the normal range, so I don't feel that I have to fix anything there either.

I'm not saying don't eat healthy or exercise. Not at all. But forget about the number on the scale and the size on your clothes, forget about foods being good or bad, forget about valuing yourself by your body shape. Eat healthy because it makes you feel better. Good quality food, from ALL of the food groups, will do you good. Move because you enjoy it. I want to get a bicycle, cos I love that feeling of riding around, the wind in my hair. I like to swim because I find it really relaxing. Dancing is so much fun because music sinks into my bones. Find whatever it is that you find fun and pleasurable by way of movement and do it.

Most of all, forget the myth that your life is suddenly going to be better if you're thinner. Because it's not. Firstly it takes more than body size to make a life good, and secondly it's statistically more than likely you'll put all the weight back on and more anyway.

To make your life better, learn to like yourself. It's what has made my life immeasurably better.