Editor’s Note: September is PCOS Awareness Month, and we are curating pieces on the varied aspects of PCOS. If you would like to submit an article, kindly write to firstname.lastname@example.org
One in five women in India suffers from PCOS or Polycystic Ovary Syndrome. It is an endocrine disorder caused by a hormonal imbalance in women across the globe, where the ovaries become enlarged with cysts on the edges.
Though statistics point to the fact that PCOS is very common in women across geographies, it is seldom discussed about in public forums and remains poorly funded as well as researched. The diagnosis and determination of the cause for PCOS is complex and attributed to a mix of genetic and environmental factors.
It is often also termed as a “lifestyle disorder“, thereby making identification and effective treatment even more complicated. Many women struggle with PCOS their entire lives without even being aware of it. Trans individuals who menstruate are also vulnerable to PCOS, and their cases are further invisibilised and neglected from dialogues.
The most common symptoms of PCOS among others include irregular menstrual period, ovarian cysts that produce male sex hormone in an abnormal amount that can lead to infertility, insulin resistance, uncontrollable appetite and weight gain, acne, hirsutism or abnormal hair growth on the face and body.
It can also trigger severe stress, anxiety, depression and eating disorders in women. PCOS affects the overall health of an individual and in a country like ours where menstruation is considered a taboo, it is important to create more conversations around PCOS.
PCOS, social stigma and eating disorders
Originally named as the Stein-Leventhal Syndrom when it was first medically documented in 1935, PCOS was initially termed as “a gynecologic and dermatologic problem”. But that is not the case anymore. PCOS has a physical and psychological impact on women’s health and that is beginning to be acknowledged by medical professionals and people who battle it.
The ambiguity about the root cause leads to late diagnosis of PCOS in most people. That in itself can have severe implications on their overall well-being because this is a hormonal disorder that can lead to further health complications. The complications of PCOS are often dismissed as solely a problem of infertility or obesity.
While both are these problems are commonly linked to PCOS, in a heteronormative, patriarchal society that treats women as designated wombs for reproduction, these symptoms are gendered and labeled as “flaws” of those who happen to have them. It makes one wonder if a woman is not woman enough without the ability to procreate life, whether her entire personality must be anchored on her reproductive ability.
In this context, PCOS is treated primarily with an aim to promote fertility, thereby also mounting pressure on women to get it fixed as soon as possible. Many doctors continue to focus on preventive measures for infertility, lifestyle change involving weight loss, and birth control pills for irregularity of the menstrual cycle.
Higher weight and uncontrollable weight gain are some of the major problems people with PCOS have to struggle with. But putting them on a strict diet, coupled with the popular standards of beauty and fertility that they are forced to comply with, often lead to eating disorders in them.
Eating disorder or disordered eating is a complex mental health condition that stems from eating problems, maintaining a diet and the stigma around weight gain, among other factors. Some of the most common types of eating disorders are Binge Eating Disorder (BED), Anorexia Nervosa (AN) and Bulimia Nervosa (BN).
There is a higher prevalence of eating disorders in women with PCOS than those without, almost four times higher. Psychologist Gretchen Kubacky who treats people with PCOS mentions in her book The PCOS Mood Cure that almost all of her patients have eating disorders or disordered eating.
Understanding the whys and hows of PCOS induced eating disorders
Insulin is a hormone produced by the pancreas that helps to regulate blood sugar levels and maintain overall metabolism of the body. High insulin level is common in most women with PCOS, and this in turn affects their weight.
However, restricting them to a rigid diet comes with some serious health risk factors. One of them being the development of an eating disorder. Anyesa Deogharia, a 22-year-old student who was diagnosed with PCOS in 2017 says, “Weight gain is a major concern because no matter how much you try to work out, the results are minimal. So it just breaks your motivation.”
The uncontrollable weight gain can often lead to weight cycling in people with PCOS. They get stuck in the vicious cycle of losing and gaining weight which mainly stems from following a rigid diet. Most others cannot fathom the complexities of an eating disorder and fail to understand their struggles.
Such lack of empathy leads them to believe that an eating disorder is something that people with PCOS have brought upon themselves. This is one of the most common, problematic myths about PCOS related eating disorders. This triggers manifests into negative body image, and other difficult mental health conditions.
Though most doctors advice people with PCOS to maintain a diet, which is indeed necessary, such strict mandates about eating also cause an increase in appetite. Hence, dieting becomes non-viable for man and this leads to binge-eating. Additionally, our heteronormative patriarchal society has promoted unscientific body standards and body image especially for women.
Fueled by mockery, shame and stigma, a consciousness of guilt develops in women with changes in their body weight. This, coupled with the failure to stick to diets and stress from everything that happens in relation, adds to their low self-esteem.
The prevalence of anxiety and depression is estimated to be higher in women suffering from PCOS. Women are bound to meet the societal standards of beauty and are shamed otherwise. Not only society but some conservative doctors also shift the blame of having developed PCOS on women, exacerbate the pressure of childbirth and demoralise them, while they already battle a hormonal disorder they have no control over.
People dealing with PCOS are also often termed ‘lazy’ and ‘negligent‘ for not being able to follow a routine diet. Anyesa says, “One of the most difficult things which I personally experience is that I feel so detached from everything and half of the days I just don’t even feel like getting up from my bed and feel randomly sad for no apparent reason as such.” This is just the tip of the PCOS related mood swing iceberg.
Since there is no ultimate cure for PCOS as such, the treatment is all about understanding how it responds to each person and managing it. In this regard, she states, “There are various blood tests and ultrasonography and even CT scans you have to do which becomes a routine.” Often the anxiety in her takes over and she gets frightened of googling answers which according to her “is an additional stress” and “can mess your mind a lot”. All of this in turn, affects eating patterns.
PCOS is a hormonal disorder that causes disruptive changes to a person’s body and a more holistic approach is needed in its treatment. In a society where fat-shaming has become commonplace, the societal pressure to attain a certain standard of beauty and carry forward gender roles makes this condition doubly difficult to battle.
Food then becomes a coping mechanism and sometimes, the only source of comfort. We need to address such layers of PCOS before we push people to follow extremely strict diet patterns and corner them for not keeping up.