Voices of PCOS: Hillary’s Story – My Unique Connection to PCOS
Posted Sep 27 2012 8:00am
September is PCOS Awareness Month. Polycystic Ovarian Syndrome affects as many as 5 million women in the United States alone and is often one of the most undiagnosed endocrine disorders in women. PCOS doesn’t just impact a woman’s fertility; it can affect her mood, weight and even lifelong health. Here at The Infertility Voice, we’re observing PCOS Awareness Month by featuring a guest post in our Voices of PCOS series each Thursday of this month.
As someone who’s pretty immersed in the PCOS world, on occasion I’ve been asked if I have PCOS. The answer to that is no, I don’t have PCOS. My connection with PCOS actually emerged in a rather round-about way due to my close and personal relationship with two associated conditions – diabetes and infertility.
For as long as I can remember, diabetes has been part of my world. I am the second oldest of six children and when I was 12 years old the first of what would turn out to be two of my brothers was diagnosed with Type 1 diabetes. Unlike Type 2 diabetes, the kind associated with PCOS, in Type 1 diabetes the body stops producing insulin, the hormone needed to mobilize glucose out of the blood and into the cells, which requires the person affected by the disease to take multiple insulin injections daily to regulate their blood glucose.
What I recall most about those early days is that my parents were really busy with doctors trying to figure out how to take care of this kind of scary health problem and that we couldn’t have a lot of sweets in the house because it wouldn’t be fair to my brother. Fortunately, my mom was a great cook and we were already pretty healthy eaters, so I don’t recall this being a drastic change. I do remember, though, being fearful that something could happen to my brother and he could die, which is pretty intense for a 12 year old.
As kids do, we all eventually got used to things being this way, so seven years later when another one of my brothers was diagnosed with Type 1 diabetes it was a familiar routine. Most importantly, I learned through my family’s experience that people can lead long, healthy lives with chronic health problems, as evidenced by that fact that my brothers are both in their forties, married with kids, have successful careers and remain without complications from their disease – which is actually quite unusual for people living so long with diabetes.
With all this experience in hand, when it came time to choose a college major, I succumbed to my mother’s frequent suggestion to think about becoming a nutritionist. She credits a registered dietitian at Children’s Hospital in Boston with helping to empower her to take care of her young children with diabetes, and it seemed like a good fit given my love of food (I grew up around a lot of great cooks!) and interest in helping people.
By the time I reached my early thirties, I’d been a registered dietitian for 8 years, and had a job as a nutrition counselor at Harvard Vanguard Medical Associated in Boston. I was married, had a two-year-old son and was trying to conceive another child. With our first, we decided it was time to start a family and within two months I was pregnant. Now we were trying for number two and months were going by without anything happening.
After about a year of this torture (which gives me great empathy for my current infertility patients), I went to see a reproductive endocrinologist at Harvard Vanguard, who ran all the usual uncomfortable tests and diagnosed me with secondary infertility. Thankfully, after a few months and some hormonal tweaking, I had a second son, to be followed almost three years later by a “surprise” third baby boy I thought probably wasn’t possible due to my obviously messed up hormones.
I remember the exact month I first saw a woman with PCOS: February 2000.
I had just come back from maternity leave with my third child and the reproductive endocrinologist I was treated by called and said she wanted me to start seeing her patients with polycystic ovary syndrome. Like most people – then and now – I had no idea what this condition was, or the role of diet and exercise.
I learned a lot from this physician, who really appreciated the importance of diet and lifestyle to manage PCOS, as well as a couple of great RD colleagues, one of whom I worked with at Harvard Vanguard who loves researching the influence of diet and exercise on physiology, and another I found online – Martha McKittrick – who was seeing PCOS patients in New York City and had written about it in an article I found on the internet.
Long story short, after seeing a few hundred women with PCOS, as a freelance writer I thought I should share my experiences caring for women with PCOS with the world, which after seven years of research and hard work became (Random House, 2010). I have since met many wonderful registered dietitians who work with this population, and thousands of women with PCOS, many through my Facebook page, www.facebook.com/pcosdiet, which has enabled me to connect with, and support, women with PCOS from around the world.
In the end, even though I don’t have PCOS myself, these personal and professional experiences have given me a unique look into what women with PCOS are dealing with, how it often makes them feel, and hopefully some realization that the things you do to manage PCOS are the same things you would do to lower your risk of a lot of health problems, including diabetes.
And the personal life lessons never stop.
A few years ago my mom was diagnosed with Type 2 diabetes, and again I’ve witnessed her amazing ability to grasp what she needs to do to maintain good control of her condition. She’s probably the most disciplined, and as a result – one of the healthiest people with diabetes I know.
She didn’t deny it; she did what she had to do. It’s a powerful lesson.
Hilary Wright, MEd, RD, LDN is the author of . She has been a freelance nutrition writer, public speaker and consultant to the food industry for over 15 years. You can find her on .
Thank you Hillary for sharing your story with everyone!
I want to thank each out this year’s Voices of PCOS bloggers: Amy , Tricia , Gabriela and Hillary for letting us have a peek into their lives and to get a more accurate picture of this widespread but often silent condition.
I hope you’ll help me in thanking them by swinging by their blogs and telling them you love their posts as much as I did
Voices of PCOS will now become a regular event here at The Infertility Voice each September. If you’d like to be considered for next year, drop me a line !