No Guarantees: A Post for Jackie

My heart is heavy today.  Very late last night, I got a message to tell me that a lovely friend of mine in the US had passed away unexpectedly.  Jackie was only in her early 30′s, and such a sweet, sweet soul.  I was only chatting with her via Facebook a couple of days ago, mere hours before she died.  Her best friend and roommate came home in the evening to find that she had passed away in her bed.  At this point we don’t know what has happened, but I know she wasn’t feeling well when I last talked to her, but she’d chalked it up to the consequences of a good night out the night before.

I think a lot about her right now, in context to the fat activism I do.  Jackie and I often disagreed on a lot of things around body politics.  Or not even that, it’s like she agreed with me in principle, but was unable to believe them of herself.  I used to feel that way too, I would think that Fat Acceptance was a great thing, and all these fat women (and a few men) were doing amazing things, and were fabulous people, but I couldn’t be like that, it didn’t apply to me.  That did change with time.  Jackie and I used to talk about it from time to time, and I was always hoping that she could see the beautiful woman I saw when I looked at her, but I know she always struggled with that.

Jackie and I had so much in common.  We were both Cysters (women with PCOS) and met online many years ago on a PCOS forum.  I was so lucky to meet her in person when I went to the US, and spend time with her and her friends (one of whom I now consider my friend) and get to know her even more.  She was such a generous soul, she made me feel so welcome, and even though we could only spend a few days hanging out together, we talked so much.  She made me laugh, and she made me think, and she made me cry.  She had the cutest Louisiana accent (though lived in San Francisco) and was one of the most stylish women I ever met.  That girl could rock a frock and a red lipstick like no other.

We have both had difficult times in our past, and both dealt with the issues of our weight, self loathing and food issues.  Our paths diverged somewhat when I found Fat Acceptance, but we still had so much in common.

Jackie did everything that a woman is “supposed” to do about her weight.  She dieted, she exercised, she struggled.  She couldn’t see that she was so beautiful, both inside and out, and she struggled with her self esteem.  I wanted so much for her to see just how wonderful a person she was.  I understand it though, I struggle with my own even now, and I’m well immersed in the soothing balm of the Fatosphere.  Eventually Jackie had weight loss surgery and lost a lot of weight.  She was still beautiful, with or without the weight, she was still intelligent and funny and kind and just a lovely person through and through.  She was one of the most glamorous women I have ever met, always immaculate and fabulous.

And she still struggled with her self esteem.  Which has always broken my heart.

As I sit here remembering her, and all of the effort and yes, hell she went through to conform to society’s ideal of femininity and beauty and “health”, it hits me all over again that she’s gone.  That even after doing what our culture tells us women need to do to be “desirable” and “healthy”, we have lost her at such a young age.  I totally understand why so many women choose this path, because it is sold to us as the only way that we’ll be of any value, and that by getting rid of fat we’re taking preventative measures for our health.  I understand that wholly, that pressure is phenomenally strong, and those of us who fight it have to fight day and night, as hard as we can to resist getting caught up in it.  We are wading against a tide that takes every bit of our strength to resist.

But I can’t help but feel cheated for losing such a beautiful friend despite her trying so hard to do what society tells us is the right thing to do.  I am angry that not even when you do what mainstream culture tells you to do, there’s no fucking guarantee that it’s going to give you a long life or even make you happy.  All I wish right now, knowing that we can never have Jackie back, is that she knows how loved she is.  That she knows how terribly she will be missed.  And that she knows right now that she has been beautiful and valuable and precious all along.

Your Emotions are YOURS

My friend and Cyster Jenn reposted something I said on Facebook as her status update last night, and while of course I was very honoured, I took the statement I had made away for awhile and have been rolling it around in my mind, thinking about what it means to me and how best to expand upon it.  I guess the best way to start is by sharing it here:

It’s not about allowing people to hurt you, it’s about your right as a human being to be treated with basic respect, dignity and fairness. We need to stop blaming the victim with the attitude of “they only hurt you because you allow them to” and put the onus back on to the perpetrator.

What I keep hearing, over and over, as a response to anyone who complains or calls out bigoted behaviour towards fat people are statements like:

“Don’t take it so personally.”
“They only hurt you if you allow them to.”
“Why are you always so angry?”
“Don’t let it get to you.”
“Just laugh at them.”
“Just let it go.  Get over it.”

And many other similar pieces of “advice”.

I really need to express my objection to this kind of attitude.  People who are harmed by others, be it physically or emotionally, have every right to be angry, hurt, dismayed, feel violated and any other way they happen to feel about the harm that has been laid at their feet.  They also have the right to expect that the perpetrator has to be the one to take responsibility for their behaviour, not them as the victims.

For too long, we’ve been practicing the old “Sticks and stones may break my bones but words will never hurt me.” attitude.  The truth is, words DO hurt people, and it is NOT acceptable to just say whatever one likes about others without taking the responsibility of the results of making those statements.

I also saw people responding with things like “Well it depends on the case…” suggesting that there are some kind of rankings for violation/abuse.  We need to let go of that attitude that there is some kind of gradient that means we should shut up for some things and speak up for others.  Yes, abuse is varying in it’s degrees, but that doesn’t mean we should just let the small stuff go.  Because what happens?  The big stuff gets bigger and more and more gets swept under the carpet.  Instead, put it back on the heads of the perpetrator.  The responsibility is with them and the level of repercussion is theirs to bear, not ours.  Violation is violation and there have to be repercussions for all of it, not just the worst end of the spectrum.

Yes, pick your battles, but that doesn’t mean you have to hide that you are hurt by the violation if it isn’t as violent as another violation.

You don’t have to pretend that their words don’t hurt.  When people tell you to just get over it or to not allow others words to hurt you, what they are doing is minimising your feelings, effectively telling you to be quiet and not complain.  They’re also minimising the responsibility of the person who has hurt you.

You can be angry. I’m not saying that you should be letting anger consume you, or other people’s behaviour from stopping you living your life to how YOU want to live it, but you have every right to feel anger and hurt and to express that.  As Marianne Kirby says in her recent post:

How dare people try to stifle our hard-won anger? Especially when we have every right to BE angry in the first place. You DO have every right to be angry. It is not wrong for you to feel that way. It’s important to find constructive ways of dealing with that anger but the anger itself is not usually the problem, okay? You are right to be angry at the people who want to abuse fatties.

She’s right on the nail.  With anger, I can fuel a whole lot of things.  That doesn’t mean that the anger controls me in any way, quite the opposite.  Anger is not the problem, the abuse is the problem.  Make the abuse go away, and off the anger goes with it.

In reference to the Marie Claire debacle of this week, the amazing Marilyn Wann tweeted yesterday:

Marie Claire says: “The opinion was that of a blogger, not the magazine. She posted an apology…We consider this matter closed.” Nuh-UH!

The prejudice-monger (Marie Claire) doesn’t decide when we’re prejudice-free. The prejudice isn’t gone until the FAT LADY says it’s gone!

Oh how I love how Marilyn can get right to the nitty gritty and say it so succinctly.  The perpetrator doesn’t get to choose how people react to their behaviour.  They also don’t get to choose when they’ve fully taken responsibility for that.  The person/people they have wronged do.

Don’t let anyone diminish how you feel.  Don’t let anyone tell you to just “get over it”.  How dare they?  Are they the ones harmed by the behaviour?  Even if they are, they choose how THEY react to it, and how they feel about it, not how anyone else does.  Your emotions are YOURS, and nobody has any right to minimise them.

*BTW: Do read Marianne’s post, it’s good advice on keeping yourself emotionally healthy and strong in the face of fat hate.

Lightning Cross Promotion

Just a quickie for you again tonight.  Some of you might know that I also run a bit of a group blog for women with PCOS over at Cysters United.

In case you’re a reader here and are a PCOS sufferer (aka a Cyster) like me, which is highly likely because PCOS makes ya fat and all, but haven’t been on over to Cysters United, I just wanted to make sure you all knew about it.

I want to inject more Fat Acceptance and self esteem content over there, and may even cross post some of the posts here.

If you’re a Cyster, give a holler in the comments hey?

More Talk about PCOS

A question came up on a forum today about PCOS and whether sufferers are a genetic “throw back” for want of a better term to earlier times of famine and higher birth rates.  I had heard this theory before, or something very much like it, when I went to the Polycystic Ovarian Syndrome Association of Australia (POSAA) conference a few years back, when Dr Warren Kidson, a leading endocrinologist and researcher into PCOS and insulin resistance in Australia, was talking about a similar concept.

I Googled Dr Kidson to see if I could find any relevant articles to share with the ladies, and I found a few interesting pieces.

The first was this transcript from the George Negus Tonight programme on the ABC (Australian Broadcasting Corporation – our public media network in Australia for those who are overseas).  It’s a fascinating interview with a couple of PCOS sufferers (and brave ladies too) that is well worth reading.  The quote that really popped out at me was from Dr Kidson

For years, when a woman would come to us and say that she dieted and exercised and couldn’t lose weight, we used to think that she was cheating – she was a liar, she didn’t diet, she didn’t exercise. But we’ve now come to realise that we were wrong – that these people try very, very hard, and despite diet and exercise, they just cannot lose weight.

I remember bursting into tears at the POSAA conference when Dr Kidson said pretty much the same thing, though I remember him using the words “Ladies, you are not disgusting pigs.” which really hit home with me.

Dr Kidson’s quote above shows the attitude of many doctors still out there, all around the world.  While many are starting to change their attitude, there are still a lot of them that still hold the attitude that women who cannot lose weight with a healthy lifestyle are cheating or liars.  I’m very thankful that Dr Kidson is working very hard to change this attitude.

I’ve mentioned before that for many years (20 in fact) I was not diagnosed with PCOS, just told that I was too fat and to come back when I’d lost weight and wanted to have babies.  In that time I was in absolute agony, dealing with a whole host of other symptoms (none of which were pleasant), violently struggling with poor nutrition due to constantly starving myself and battling crippling depression which has now been linked to PCOS.

The other link that I stumbled across was this one from the POSAA website, titled “What Every Woman and her Doctor Should Know About PCOS“.  It links to a PDF file of a paper in common language that Dr Kidson and Dr James Mackenzie Talbot wrote a few years back for women to take to their doctors.  Copies were handed out at the POSAA conference, as the good doctors hadn’t yet been able to have the medical paper version published in the Australian Medical journal yet.

I photocopied it and took it to my doc, who is a lovely lady and she promised to read it.  When I returned on my next visit, she mentioned that she had read it, and that “Perhaps we need to try a different tactic.”  I think this might have been one of the catalysts to a turning point in how she treats PCOS.

About six months later I went in to see her and she greeted me with “Hey!  Your doctor fellows have had their paper published!”  I was so glad to hear that it had gone out in medical journals for other doctors to read, in the hope that they might change their attitude in treating women with PCOS.

If  you have PCOS, or you suspect that you  might, please download the PDF, print it out and take it to your doctor.   It is useful for non-Aussies too. Highlight the bits that you match up with symptom wise.  If your doctor will not listen to your suspicions on your health, find another doctor.

After all, you, or the medical insurance you pay for, is paying for them.

PCOS – Let’s Not Be Silent Any More

This morning I finally took the time to read this article from ABC News by the rather fabulous Sabra Lane, who used to be the President of the Poly-cystic Ovarian Syndrome Association of Australia (POSAA) on the “hidden epidemic” of Poly-cystic Ovarian Syndrome (PCOS). A very comprehensive article on PCOS by Sabra, and though I disagree with the concept of “lifestyle changes” actually being of any use, the article outlines the difficulty of living with PCOS that at least 11% of Australian women face every day.

I actually wanted to talk about one particular sentence in that article tonight. And it’s this:

A study in the UK a couple of years ago found some PCOS women experience the same level of anxiety that breast cancer patients do.

I actually read the report from that study when it first came out. It sounds shocking doesn’t it? It sounds almost like an exaggeration, after all, how can women with a syndrome that isn’t terminal have as much anxiety as someone with cancer? After all, isn’t cancer the most terrifying, horrible thing that can happen to your health?

At the time I posed this question to a man I knew who had been through the cancer battle with his ex-wife. And his answer shocked me. He said “Well, I can understand that, because everyone steps up to help you when you’ve got cancer in your life, but most people don’t believe PCOS really exists, or that it’s any big deal to it’s sufferers.”

The more I thought about it, the more I can see it. Not that I’m diminishing the horrible impact of cancer on people’s lives, both sufferers and loved ones. I can think of nothing more devastating. But when it comes to anxiety, I can totally understand it.

After all, most women with PCOS have to fight for a long time to get a diagnosis. I myself had 20 long years of presenting to doctors with PCOS symptoms before I was diagnosed. We’re told we’re just too fat, lose weight and all our problems will go away, though anyone who knows anything about PCOS, knows that losing weight is extremely difficult for a PCOS sufferer. Even if we do lose weight, more often than not it makes not a lick of difference to our symptoms. It didn’t to mine, I maintain that it made them worse in most cases.

PCOS has been referred to as the “Ugly bitch disease” by some misogynistic douchebags. Because it causes weight gain, cystic acne, hirsuitism and hair loss (yep, you can have both at the same time!) and a myriad of other fun symptoms. I also believe it causes depression, though this has not been added to the official swag of symptoms yet. So as well as all the so called “ugly” symptoms, we’re also not always able to be shiny-happy women.

Is it any wonder we suffer anxiety as well?

PCOS also rips apart a woman’s self esteem. Because it tears apart the fabric of what women are usually expected to be in Western society – thin, clear skinned, hairless, cheerful and good breeders. As Sabra says:

PCOS is a hidden syndrome in our society, because it encompasses many social taboos: excessive hair, obese/overweight women, childless women, depressed women.

Which is also part of the reason why this doesn’t make news. News executives far prefer to concentrate on young, pretty, fertile women.

So consequently, most sufferers of PCOS feel anything but feminine and valuable. They believe themselves to be failures as women. They feel (and are often told by the douchebags of society) that they’re fat, ugly, hairy, stupid, lazy, gluttonous, barren, unfeminine failures. That they are worth less because they don’t fit some kind of ridiculous expectation of what a woman is supposed to be. Plus we’re not allowed to talk about it, because it’s taboo.

Is anyone still doubting that women with PCOS often suffer high anxiety? And that hasn’t even got into the vast physical pain we usually suffer in our reproductive cycle.

Here’s something I want to say to all the women with PCOS who might be reading this.

For about 4 years now, I’ve been actively seeking out other women with PCOS, or “cysters” as we’re known, to have women around me who know what it’s like to deal with all the icky things we cysters have to deal with, as quite often I didn’t really feel like I had the right to have “normal” women around me. I have met hundreds of cysters, both here and in the US when I travelled there almost 2 years ago, not to mention the hundreds I have met virtually through various online communities that I haven’t had the pleasure to meet face to face yet.

Those women have been incredible. Awesome. Amazing. Inspirational. Generous. Loving. Strong.

Beautiful.

I seem to be able to spot a cyster a mile away. There is a mix of outer vulnerability and yet deep inner strength that I can see straight away. I see the signs of low self esteem, but also signs of grit, strength and inner fortitude that most other people never need to develop. Cysters so often feel they have to fight, they have to work, they have to protect, they have to struggle just to get through day to day life. I believe that develops in them an incredible strength of character that many other people never develop.

Being active in the cysterhood has brought me so many amazing women into my life, who have given me so much love and kindness, I could never repay it back. It’s through loving them that I’ve found the ability to let go of all the PCOS self-loathing and love myself.

I want to give that back. I want to help cysters find the ability to love themselves. I want to build their self esteem like they built mine, to squash the demon of self-loathing that haunts cysters. The only way I know how to is to write. Then write some more. So I’m going to do that for my cysters.

Ladies, if you’re reading this and have PCOS, speak up here in the comments. I want you all to tell me a story about a cyster you know who is awesome. Because she probably feels like she’s a failure every day, just like you do. Let’s celebrate the cysterhood.

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.