If you’d asked me 15 years ago if I’d be running a foundation devoted to raising funds for hormone research, I’d have told you that you’re crazy. How did a dietitian with plans to open a counseling practice in eating disorders get from there to starting the inCYST Institute for Hormone Health?
It started in graduate school, when I researched the female athlete triad, a cluster of problems, including eating disorders, osteoporosis, and menstrual problems. I couldn’t understand the articles I needed to read, so I extended graduate school by one year in order to take an endocrinology course. That course, the hardest and most fascinating one I ever took, completely changed my life. I became fascinated with the complex web of brain, hormones and target organs.
I eventually worked at an eating disorder clinic, where much of the treatment was (and still is) focused on the behavioral aspect of the disease. The more I spent time with the patients, the more convinced I was that one of the most important contributors to the condition, was neuroendocrine. As one of the few “hard science” trained professionals at that facility, I became frustrated at the resistance to my idea. I left, and accepted an opportunity to write the American Dietetic Association’s first-ever clinical guide for eating disorders.
When the book was finished, I intended to start that private practice. But something started happening. I started getting phone calls from women with eating disorders (not professionals) who had purchased the very nerdy textbook, looking for answers. One question kept coming, and consistently. “Do you know anything about polycystic ovary syndrome? I used to have an eating disorder, now I have PCOS.” I had to admit, I’d never heard of the syndrome, except for a few articles I’d run across while writing the book.
I started researching. A connection was clear. I thought perhaps my path was supposed to be bringing this information to my colleagues and enlightening them to the need for an endocrine workup as essential to eating disorder assessment. I sent over 200 individual letters to members of the Academy for Eating Disorders. The handful of professionals who wrote back, though nice, thanked me and told me there was no such thing as PCOS in their clients. I appealed to the reproductive endocrinology community, since many of these women were resorting to in-vitro fertilization. Despite regular outreach professionals in my local community, I received little response to any efforts I made to connect.
The women kept coming. The information I continued to find on the Internet was primarily health providers in cash pay specialties (reproduction, dermatology, bariatric surgery) and supplement sales people, selling services and goods to desperate women. Or women with PCOS themselves trying to start support communities they weren’t finding.
I started applying a few nutritional principles based on my reading to women who asked for consultations. We started seeing results. Pregnancies, even to a few women who had been told they were in menopause or that their only option was IVF. Resolution of mood, migraines, sleep. So I started a training program for professionals who were showing interest in what I was doing. Today we are approaching 60 strong, primarily forward-thinking dietitians, but also including psychologists, health coaches, an attorney, and most recently, a yoga teacher.
That wasn’t enough. I didn’t want to be just another professional imposing MY opinion on the other opinions out there, constantly having to work twice as hard as a physician to prove myself because I wasn’t a physician. I wanted to be sure everything we did was supported by research. So I put it out to the Universe.
One day, one of our network members, a dietitian in New Hampshire, called to ask if I could help a young woman attending her support group, who wanted to donate money for research. She’d spent a couple of years feeling defeated with her PCOS diagnosis, and decided to organize a walk-a-thon with the intent of raising money for research. No one she approached was receptive. Exasperated, she asked someone why. The answer? “Your disease isn’t sexy enough to be a worthwhile cause.”
I was infuriated that a woman who was working so hard to pull herself out of a hole, who wanted to do something positive with her time, would be repeatedly turned away by people she was reaching out to. She wasn’t even asking for anything, except to GIVE. I was insulted FOR this woman and every woman she wanted to help.
I told my colleague to find her, and tell her that if she was willing to raise money, I was willing to start the foundation. Today, we are in the process of filing papers for the inCYST Institute for Hormone Health and Beth, the woman in New Hampshire, has started Power Up for PCOS, an entity that raises money for the research we plan to support.
Because of our collective experiences, we’re committed to supporting research that levels the playing field for the women who need help. We want to look at natural and complementary treatments, and to support projects that focus on the real cause (and therefore effective treatments) for PCOS.
It’s taking awhile for women with PCOS to trust that we’re on their side. I understand. If I’d been beaten down, blamed for my illness, been sold treatments and concoctions that didn’t work, I’d be skeptical too.
Just this week two different former eating disorder clients whose therapists steered them away from inCYST when I mentioned PCOS, have been put on metformin. One is so debilitated she is on nonpaying medical leave from work. That is why we do what we do. It shouldn’t have to be this hard to get help.
The women I meet through this work are incredible and they deserve support. They have ours at inCYST, and if I have my way, we’ll be earning it from the research brains that have the ability to help them.