Scrambled – A Journey Through PCOS

I was diagnosed with PCOS in 1994. At the time I had never heard of PCOS- and I didn’t know any women who had it. By 1997 I was lucky enough to find the Polycystic Ovarian Syndrome Association (PCOSA)- where I found online chat groups of other women struggling with many of the same issues as I was. It was there, reading about what they were all going through, that I began to understand PCOS.

About that time I thought about making a film about PCOS. I was interested in how media could help communities, and I was a filmmaker who liked telling stories about the inside experiences we go through, and how they interact with the outside world. I researched, made a public access show, and applied to a graduate program where I would commit two years of my life to making this film.

And it made me nervous! Suddenly I was in the position of talking with all my fellow students about PCOS- periods- fertility- having facial hair- being fat. I pushed myself to be honest, as I knew I wanted to make a film that would show how hard it is to reveal these very personal and vulnerable parts of ourselves. As I worked on the film I had the help of some very dear friends who seemed proud of me for doing this.

When my graduate program was over in 2000 instead of going to my graduation I showed the film at the PCOSA conference in San Diego and it seemed that people really enjoyed it. I was nervous, and artistically I wasn’t satisfied with that cut of the film. It needed more editing, I needed time and money, and the demands of normal life took over. On some level I was tired of the process, of talking about PCOS every time I met a new person. I needed a breather.

Finally, sometime in 2002 I managed to complete the 41 minute film to my satisfaction. I began distributing it online to women with PCOS (I made VHS copies at home) but I wanted to reach a larger audience- especially professionals. I signed on with a distribution company and was no longer allowed to sell the film myself- and the film didn’t sell very well. I was frustrated and didn’t know what else to do with it. I was busy teaching, making another film and PCOS faded into the background.

When I finally got the rights back from the distributor I decided that I wanted to re-release the film and add more updated material to it. I began interviewing people from a variety of healing modalities, many I met at the PCOSA conference in Colorado, and I felt like I was understanding PCOS in a broader context. I interviewed 3 women who generously shared with me their experiences with PCOS- and one was my sister! I was excited to share all this new information with people.

But still I had trouble finishing the film. A part of me must have been nervous again about revealing myself and PCOS publicly. Facebook would be a great way to reach audiences- but did I really want to tell all those people from my High School that I had PCOS?

When I began sharing about PCOS at Facebook it was those very people I went to High School with who revealed to me that, they, too had PCOS. Just as in 1998, when I was making the first documentary, people I had known for years suddenly told me that they had PCOS and were struggling with many of the same symptoms I had. Friends I was in the Women’s Art Collective with in College. A dear old friend who hadn’t told anyone yet that she shaved her face. The office manager at a job. The cousin of my neighborhood friend and computer guru. The woman I took the bus with in Highschool who I admired for her youthful social justice work. The daughter of a freelance client. The list goes on, but the details fade into what has become my new normal awareness of something that had previously been hidden.

As I’ve become more public about PCOS I have had the privilege of sharing my film, and letting more women know that they are not alone. I’ve had some friends offer great support and understanding. I’ve also met people who seemed to avoid a discussion that centers around women’s reproductive health- who made me question my own willingness to reveal myself. The shame sometimes returned, and I didn’t feel all that eager to finish the DVD and begin a public marketing campaign. I felt the drag of an unfinished project- and moved ahead very slowly.

I never could have imagined it, but then I met a wonderful man who not only didn’t run away when he saw the film, but he told me that it moved him and made him respect me more. He told me I was brave- but I wasn’t sure I could believe him. I wasn’t sure I was ready to go completely public with PCOS and I had all that tape to edit, a DVD to author, a distribution plan to create, and no funding. It wasn’t a massive amount of work, but it was hard to do alone.

But he helped me- watched interviews with me and discussed which sections to keep, which were irrelevant or unclear or repetitive. He helped me see connections between the different interviews. Although he wasn’t a film editor, he had a very literary mind that intuitively understood the process. Even working long-distance over skype- with his help I finished the edit. Friends helped me by taking time to watch everything and make corrections to sound, text and editing mistakes. My family helped in many ways. A friend designed the DVD cover, others wrote the text, and another friend’s financial contribution allowed me the time to do the work.

Since announcing the film I’ve received so much support from people I know, and from the PCOS community. I was on a radio show and written about in the PCOSA Newsletter. A woman I just met has offered incredible help in my distribution/outreach efforts. We will work to get the film to universities and community groups- and to reach women with PCOS online. PCOS- this thing that once felt secret, hidden, shameful is now something I’m pleased to speak about publicly. I also know deeply we need help from those who care about us and our mission, and that we shouldn’t spend too much time with those who can’t see, encourage and love us for who we are. Making this film – and having PCOS- has been in many ways a blessing in disguise- a chance to connect with people in new ways, hopefully to serve oters, and to harness something that was once a struggle of solitude into a celebration of community, friendship and honesty.

Thank you.

Oh, the carb… I’ve been following a low carb (or low glycemic index) diet since about 1998 to treat my PCOS. At that time we were just beginning to understand that PCOS was connected to insulin resistance- today I hope that most people who are involved in treating PCOS understand that ‘lifestyle’ is the key to managing this complicated syndrome.

It wasn’t easy giving up the foods that we all love. But once I did- my menstrual cycle found a real 28 day rhythm – and I can’t begin to tell you how much of a difference that makes! I think Kawana who I interviewed for Scrambled put it better than anyone- when you don’t have a regular period- you feel like you are constantly in a “Funk”.

Every woman’s PCOS is different. What works for me might not work for you, and what works for me today might not even work for me tomorrow! Learning our own ‘trigger foods’ and seeing how much carbohydrate we can tolerate is part of an important feedback loop. Learning to pay attention to the subtle shifts in how we feel becomes a crutial point of attention, and essential to our healing.   Many of us have been plagued for years by energy/mood fluctuations, weight gain, menstrual irregularity and cravings that feel impossible to control- and it is amazing to feel the veil of all that murkiness lifting!

It is important to understand that carbohydrate cravings are biochemical – the excess insulin we produce makes us want more carbohydrate. The cravings don’t represent some kind of moral or character failing. It is not our fault!  The person who can eat one square of chocolate and feel pleased and satisfied has a different set of chemical responses happening in her body.

In some ways changing my diet wasn’t too hard. I love to cook and I don’t eat out often- my Mom taught me very healthy ways of cooking and a great appreciation of vegetables. I’ve learned that as long as I stay away from foods that set me off-  my cravings fade away and I have a pretty peaceful relationship with food. For me that means anything sweet. Yes, unfortunately for me that means even fruit.

People sometimes kindly offer ‘just a taste’ of dessert to me- and I’ve learned that I must refuse. There has never been a ‘just a taste’ moment for me. That first bite leads to more, and suddenly I’m waking up in the morning wondering where I’m going to find my next sweet.  I have a lot of compassion for people who struggle with drinking or smoking or drugs- and I understand how when an addiction is biochemical – moderation is not an option.

But craving isn’t the same as longing. As I write now I feel longing for what I don’t eat… but I don’t feel craving. In the moments when craving comes over me, nothing else matters but finding and then finishing the container of ice cream or bag of cookies. I want to stop, but a stronger energy directs my action. I think I should have the ‘will power’… but my body is speaking a different language. For me- abstinence is the only way to handle the cravings. The less sweets I eat, the less I want.

There is another class of carbohydrates that I sometimes dabble in – but try to seriously minimize and keep out of the house- things like bread, potatoes, and grains. As long as I eat a little bit- a bite or two- with a full meal complete with protein and fat I can tolerate them. But if a loaf of bread was in my house it would not last very long.

I like how Martha McKittrick speaks about the importance of letting go of ideas about ‘good’ and ‘bad’ foods. There are no ‘evil’ foods- and I certainly can’t blame my ancestral foods like pasta or challah for the fact that my body doesn’t respond well to them!

After years of trying to avoid the foods that tempt me I am learning to find less anxiety by appreciating the world-of-carbs as beautiful gifts from the universe and great expressions of culture. I respect the carbohydrate’s immense role in the development of humanity, the joy and energy it brings people, and I look forward to a day when we know how to treat the underlying insulin resistance associated with PCOS and I will sit in the sun and once again enjoy the sweetness of an apple.