I actually came into working with PCOS through the back door, as someone who had specialized in eating disorders treatment first. I'd left my work at a treatment center, launched an eating disorder website, and women started calling me saying,"I used to have an eating disorder, now I have something called PCOS…do you know anything about it?"
It happened enough times that I started researching the syndrome, realized there was not a lot of good, standardized information about PCOS, saw the niche that needed filling…and there you have it, the Cliff's Notes version behind the inception of inCYST.
The correlation between the two conditions is so strong that I often wonder if it isn't the exact same problem being given a different name and treatment, depending on whether or not a physician or a mental health professional makes the initial diagnosis.
Because diagnosis and treatment can start in two completely different environments, there can be problems with outcome.
--Physicians accustomed to other diagnoses that respond to a simple medication or surgical procedure, may not have the interest in considering the emotional aspects of PCOS. A dermatologist actually said to me once,"I just want to take care of skin cancer. I really don't want to deal with all of those emotions."
--Even dietitians who work with diabetes and can assume they have expertise with PCOS, may not have the patience to delve through the layers of hormones and emotions and reactions to imbalances between the two, to help a client understand how all of these pieces fit together.
--Psychiatrists may be prescribing medications that exacerbate hormone imbalances and PCOS, and not consider that the weight gain and other side effects are a huge reason for medication noncompliance.
--Psychologists may not understand that anger, even rage, and depression, is very strongly affected by hormone imbalances, not entirely based on what's going on in a person's world. They also need to understand that a client can be absolutely, completely, 100% compliant with every single assignment they're given…and STILL have cravings and not lose weight. They need to not project that disappointment on the client, but take it as a cue that they may be missing an important part of what's going on.
--Eating disorder specialists I've worked with seem to be much more comfortable working with"thin" women with eating disorders. I remember when I worked in the treatment center, the women with binge eating disorder never seemed to get the same sort of attention. There seemed to be a size discrimination even coming from professionals who were supposed to be advocating for the opposite.
--Body image specialists may not completely understand that with PCOS, there are genuine and valid body image issues that are not distorted thoughts. There is facial hair. Acne scarring. Hair loss. And the cysts on the ovaries can create a feeling of bloating that is valid, not imagined.
My personal feeling is that you cannot effectively and successfully treat PCOS unless you are helping both mind and body.
If you're a physician, you need to be sure that your client has adequate emotional support rather and not just increase a medication dosage because you're not seeing progress on lab reports that you'd like to see.
If you're a dietitian, you need to have access to a size-neutral psychologist who understands the syndrome and not be afraid to refer and work together as a team.
If you're a mental health professional, you need to understand that just because your client has a disease with a physiological basis, your place in their treatment is not threatened…in fact, it is more important.
You just need to enhance the number and type of issues you can help them with.
All of us need to stop attaching symptoms and needs to a certain weight. To assume that if we get down to a certain weight the syndrome magically goes away. It's there no matter what. I just had an enlightening conversation with a dietitian who has gone through my training, is embarking on her PhD, is normal weight, and teaching at the university level. Even though she's doing all the right things, she says she STILL has times when her appetite is out of control and it completely frustrates her.
The link between eating disorders and PCOS is very, very strong. We need to embrace it and study it so we can help women tackle both and accomplish great things in their course of managing the syndrome. All of us are going to have to step outside of our personal comfort zones as professionals to be effective, and to stop thinking we can help women with PCOS all on our own outside of the structure of a team. inCYST would like to make that a rewarding risk for anyone who chooses to take it.
So 2011 has been designated inCYST's year of eating disorder outreach. We've got two learning opportunities for you who are interested in learning more.
This coming Monday, at 12:30 pm Eastern time, inCYST dietitian Janenie Wade and her business partner Ellen Shuman will be on our radio show sharing more about their collaboration with A Weigh Out, an online and phone coaching program specifically designed to help women with binge eating disorder and able to account for the presence of PCOS. Come tune in and get your toes wet, and see what they're doing! Maybe it will inspire you to want to do more as well.
This spring, in Scottsdale, Arizona, the Binge Eating Disorder Association is holding its annual conference. It's a great place to start learning more (in a beautiful climate, I have to add!).
Of course, we're always looking for mental health professionals to join us at inCYST as well. Our training is open to anyone who would like to take this on. Just let me know if you're interested.