How to Talk to Your Friends & Family About Polycystic Ovary Syndrome (PCOS)

As seen in USA Today

By Amy Medling, founder of PCOS Diva

If you know you have Polycystic Ovary Syndrome (PCOS), you are one of the lucky ones. Yes, you heard me correctly. While PCOS affects 5-10% of women worldwide, less than half of us are diagnosed. That means there are millions of women struggling with no idea why they have symptoms like obesity, irregular menstrual cycles, infertility, depression, acne, and hair loss. So, as I said, you’re lucky – you at least understand what is happening.

You would think that with PCOS as widespread as it is, more people would be familiar with it. This, as you know, is not the case. Often, people notice our symptoms and assume there is some underlying reason. If we are obese, people assume we have no willpower. If we have acne, they assume we have bad self-care or diet. Until PCOS becomes more widely understood, we must be our own advocates and PCOS ambassadors. And to do that, we need the right approach. First, you must understand the syndrome.

What is PCOS?

Polycystic Ovary Syndrome (PCOS) is an endocrine (hormone) disorder that affects almost every system in the body. It is clinically diagnosed with some combination of three symptoms: polycystic ovaries, lack of regular ovulation, and/or an excess of androgens (male hormones). That said, the real symptoms of PCOS are wide-ranging and vary from woman to woman. Symptoms include, but are not limited to:

• Easy weight gain and/or obesity
• Fertility Issues
• Irregular menstruation
• Acne
• Cardiovascular issues
• Polycystic ovaries
• Type 2 Diabetes
• Depression and/or anxiety
• Eating disorders
• Hyperandrogenism
• Insulin resistance
• Hirsutism (excessive hair growth, especially on the face)
• Sleep apnea
• Scalp hair loss

Since the symptoms of underlying PCOS are so diverse, doctors typically treat individual symptoms without rooting out the common cause. Thus, PCOS is underdiagnosed and so, much more difficult to treat in a sustainable way.

Many doctors prescribe the birth control pill and/or metformin right away for women with PCOS. For some women, this works – for a while. It levels out their hormones and/or insulin and gets them on track. Unfortunately, these drugs are a band-aid. Until you learn to manage the root cause, the symptoms will return when you eventually stop taking them. This can be especially frustrating if you are trying to conceive.

Research indicates that the first-line treatment for PCOS should be diet and lifestyle changes. If you have PCOS, you have surely been told by your doctor to go on a low-carb diet and exercise. While this is good advice for just about anyone, it isn’t really specific enough for women with PCOS. We need to consume whole, anti-inflammatory foods, fill in gaps with high-quality supplements, manage our stress, and exercise in ways that don’t overtax our adrenals.

So, what do you tell people?

Try to be positive but honest. There are a lot of struggles that come with PCOS. It is a lifelong condition that requires your attention, but it is manageable, and there are upsides. You have been given an opportunity to make changes to your diet and lifestyle now before many of your peers have begun to feel the effects of the Standard American Diet (SAD), and they will eventually be forced to live with the long-term consequences when they make changes too late. You also have stronger bones[i], and while you may struggle to get pregnant at first, you will be fertile longer[ii] than your non-PCOS peers.

Here’s my elevator speech for close friends and family: “I have Polycystic Ovary Syndrome (PCOS). It is an endocrine disorder, which means that my hormones are out of balance. It causes inflammation and affects most of my body’s systems including blood sugar regulation (which makes it easy to gain and hard to lose weight), reproductive system, and mood regulation among other things. PCOS is a lifelong condition, but I am making diet and lifestyle changes that will help me manage my symptoms.”

Here’s my elevator speech for strangers and acquaintances: “I have Polycystic Ovary Syndrome (PCOS). It is an endocrine disorder which means that my hormones are out of balance. It causes inflammation and affects most of my body’s systems. PCOS is a lifelong condition, but I am making diet and lifestyle changes that will help me manage my symptoms.”

What is the best way to ask for help?

Asking for help is a challenge for many women. We don’t want to be dependent, appear weak, or “put anyone out.” We are programmed to offer help, not ask for it.

In order to truly thrive with PCOS, a mindset shift must occur. In a nutshell, you need to make the conscious decision to engage in extreme self-care. That means deciding that you are worth caring for and taking steps to make that happen. That also means allocating resources (emotional, financial, and time) to healing your body and maintaining your health. A lot of that comes from you, but sometimes you need support. In the end, you and everyone around you will benefit.

Here are my 4 best tips for asking for help:

• Be clear and concrete. “I need help with” is a good way to start. Be clear in your goal. For example, “I need help sticking to my anti-inflammatory diet” or “I need help managing my stress” may rally the support you need. “Please support me” is a good follow-up, but use specific examples like, “take a walk with me after dinner,” “don’t bring me bagels from the break-room,” and “be patient with my mood swings.” This can go a long way to getting the help you really need. Often, you don’t get what you don’t ask for. Be specific.
• Decide you are worthy of receiving help. Everyone needs help sometimes, and you are no exception. You add value to the world around you and deserve to be healthy. Asking for help gives others an opportunity to feel needed and valued.
• Be grateful. Remember to thank people when they help you. Even if it isn’t all the help you needed, acknowledge their effort. It will encourage them to keep trying and acknowledge even the smallest blessings in your life is good for your spirit.
• Know that you will repay the help one day. Your opportunity to give back will come. As you heal physically and mentally, your capacity to help others will grow.

You can thrive with PCOS. Sharing your journey with family and friends can lighten the load. Be open and honest. Acknowledge the challenges, but look for the positives and solutions. And above all, be kind to yourself and let others do the same.

As a certified health coach and best-selling author of Healing PCOS, Amy Medling often hears from women with Polycystic Ovarian Syndrome (PCOS) who are frustrated and have lost all hope when the only solution their doctors offer is to lose weight, take a pill, and live with their symptoms.  In response, she founded PCOS Diva and developed a proven protocol of supplements, diet, and lifestyle programs that offer women tools to help them gain control of their PCOS and regain their fertility, femininity, health, and happiness.

References:

[i] Notelovitz, M. “Androgen Effects on Bone and Muscle.” Fertility and Sterility. Fertility and Sterility., Apr. 2002. Web.

[ii] Hudecova, M., J. Holte, M. Olovsson, and I. Sundström Poromaa. “Long-term Follow-up of Patients with Polycystic Ovary Syndrome: Reproductive Outcome and Ovarian Reserve. “Human Reproduction. Oxford University Press, 24 Jan. 2009. Web.