PCOS and its invisible struggle
I was 16 when I got diagnosed with Polycystic Ovary Syndrome (PCOS). My doctor elaborately shared a technical and unsentimental description of my condition, along with some prescribed birth control pills. She shared that this is a commonly occurring hormonal condition among women that would stay with me for the rest of my life and suggested a few lifestyle changes and precautionary measures, to gain some control over it. Little did I know, the all-encompassing journey I would embark on would change everything. The shock and insidious normalization of this condition didn’t allow me to properly grieve the loss of the life I previously lived.
Image Description: A white paper crumpled with the letters PCOS written in black and underlined kept in front of a pink background. https://www.dreamstime.com/photos-images/pcos.html
Women (AFAB) are grown and conditioned to fulfill standards of womanhood and femininity since their childhood. We’re trained, educated, and “motivated” to work towards having a particular body, with flawless skin, fertile wombs, and composed minds. Polycystic ovary syndrome (PCOS) is a common endocrine disorder among females( affecting 5-10% of the female population) with common symptoms of weight gain, excessive hair growth, acne, irregular menses, and infertility. Another side, often unexplored is the common experience of anxiety, depression, eating disorders, stress, and suicidal ideation associated with PCOS. While doctors do an incredible job of helping one explore ways to measure and manage symptoms of hormone imbalance, their ignorance towards its mental implications can be severely damaging to women’s mental health.
MEDICAL SCIENCE, GYNECOLOGY, AND THE FEMALE BODY
Women (AFAB) diagnosed with PCOS are flooded with a list of changes to “manage” their weight with dietary restrictions and gym memberships, along with effective hair removal methods and a “new skincare routine”. The persistent normalization of pain ( physical or emotional) that menstruators are expected to undergo completely disregards the suffering they endure. The lack of support and understanding of their experiences isolates them to live through the unfair turmoil enforced upon their minds and bodies.
Any underlying hormonal misalignment leads to chaos in our mental functioning. Although, finding the source of its mental health implications is often complicated, due to various facets that affect women’s mental health. While we have a significant dearth of research articles of the scientific and biological indications about “managing” or “controlling” symptoms of PCOS, we ignore the fact that science cannot be separated from its context. Gynecology and medicine often categorize and associate the definition of a “normal healthy woman” that often emphasizes and builds on the concepts of femininity and fertility. The health of the uterus becomes the center, where the women’s identity is built around it. The helplessness of being unable to uphold this standard of “womanhood” can be damaging to one’s self-concept and perception. This androcentric bias of medical science has not only shaped the “normal”, but it’s also the reason for the lack of research towards the physical and mental health of marginalized groups. (Bauer et al., 2009)This perpetuates and contributes to inexperience and ignorance of lived experiences faced by female-bodied individuals, including trans and non-binary people.
An article from Clue (Bell, 2018), describing PCOS experiences of trans, genderfluid and non-binary individuals, reflected on the insensitive and compassionless approach of medical professionals. Gynecologists would often invalidate their lived experiences by attributing increased testosterone to “certain masculine behavior” or conduct examinations without checking with their discomfort. The diagnosis of PCOS would ignite various questions about their gender identity; whether consumption of hormonal treatment or pills would make them more “female”. Many queer individuals fear disclosing their identity, due to the lack of sensitivity towards queer experiences with medical treatment or consultation.
PCOS is more than a physical manifestation of hormonal imbalances. Experiences of medical violence and lack of emphasis on psychological implications lead to fear and confusion regarding one’s body, mood, and stigma. The lifelong nature of the condition, complicated journey towards diagnosis, and lack of effective treatment options can deeply impact one’s mental health. The casual blind eye towards the list of side effects on birth control prescriptions is considered to be a small sacrifice for managing symptoms. It’s important to understand the biological and psychosocial factors that contribute to these mental health concerns.
“IMPERFECT FEMININITY” AND ITS DAMAGE
Our society upholds various standards of beauty and body for females. From the endless options of hair removal to products that cater to the perfect clear skin, we are encouraged to “take care” of our bodies strenuously. The presence of abnormally high levels of testosterone in women with PCOS, causes “male” pattern growth of facial hair, acne, and thinning or loss of scalp hair. Our society conditions us to see masculinity and femininity through immutable binaries. These rigid binaries often act as a gatekeeper for what is considered to be appropriate for a female-bodied individual. The female body, because of falling outside the traditional idea of femininity, is viewed as “unhealthy”, “undesirable”, “abnormal”, and often “unnatural” to society.
The damaging impact of these standards on one’s self-esteem is often unseen. The shame associated with one’s appearance often forces women to conceal their “real” appearance by engaging in painful and lengthy processes to alter their image. PCOS also predisposes women to excessive weight gain, along with difficulties with losing weight, which has led to reports of eating disorders. The rejection of body hair and aversion to fatness by society creates a feeling of agony. It’s difficult to gain acceptance towards your body image when your doctors advise you to change and work towards losing weight, to help you manage your symptoms. Reports of Binge Eating Disorder (BED), Bulimia, and Exercise Bulimia (over-exercising to compensate for eating too much) associated with PCOS, signify the damaging impact PCOS fuels towards a negative body image (Kaur et al., 2019). The systemic downplay and ignorance of mental health concerns by the healthcare system, isolates individuals to turn inwards with the grief, resentment, and pain they hold towards themselves. Women are held responsible for not doing enough; they’re deemed lazy for not taking care of their health and bodies. The loss of control over the functionality of one’s body becomes a testament to one’s agility.
Further, women are often treated as potential vessels for babies in the socio-cultural context. Growing up, they are prepared and conditioned to prepare themselves and their bodies, to fulfill the purpose of extending the family line. The ability to have biological offspring provides them with social security and acceptance, along with the honor and “blessing” of motherhood. Infertility or difficulties in conceiving destabilizes this construct of womanhood. Women with PCOS often experience difficulty with conceiving, often experiencing an immense amount of blame and shame. Threats of divorce, rejection, and shame bestowed upon the family, are a burden solely carried by the woman (Mishra & Dubey, 2014).
NORMALIZATION OF PAIN
Many individuals with PCOS, during their menstrual period, experience heavy bleeding and severe period pain. Since menstruation is a frequent aspect of women’s lives since their adolescence, the pain experienced and communicated during this period is minimized and played down. One’s expected to “adjust” and grit one's teeth through the suffering one experiences because of the pain. The normalization of this pain forces women to endure dysmenorrhea (commonly known as “cramps”) through their daily life activities and work, without any complaints.
Women fear being viewed as weak or incompetent in workspaces if they ask for time off for the pain endured. Workplaces often disregard or belittle “this time of the month” by attributing complaints of pain as a reflection of being inadequate to perform their job. Women are often looked over for promotions or important work due to the invisibility of this pain. We need to recognize this pain as valid, before extending empathy and examining ways to manage it.
Research conducted by Thorpe et al.(2019), asked their participants ( 83 cis-women, 6 non-binary) to describe their experiences of PCOS through drawings and personal accounts. Some of these drawings included question marks placed over a womb space and large ‘x’s placed over drawings of infants or mothers with children, signifying the loss of motherhood experienced by them. Their self-portrait would often depict feelings of sadness and disappointment. Their self was often positioned in the center of judgment faced by others around them.
“Drawings often had a dreamlike quality: daydreams about children, the nightmare of exposure to judgment from others, thoughts of a bedraggled, worn-down body with too many lumps of fat and hair in unwanted places or the desired self shown in a mirror or a before-and-after sequence.” (Thorpe et al., 2019)
PCOS was represented as a force that governed their body and their life. Participants would draw themselves as ‘ugly, unfeminine and broken’. The theme of PCOS acting as a wall or barrier reflected on how PCOS inhibited them from living a “normal life”. Dream bubbles of babies and pregnant bellies displayed the dream and experiences of facing obstacles with pregnancy. Experiences of feeling weighed down were evident in a lot of these drawings.
These drawings and personal accounts are a small part of their experiences. Mental health concerns and struggles are a significant part of one’s PCOS diagnosis and embodied experiences. As an individual with PCOS, if you feel or see any of these signs that affect your mental health, it is important to reach out and seek help from a mental health professional. These invisible struggles aren’t your burden to bear alone.
Bauer, G. R., Hammond, R., Travers, R., Kaay, M., Hohenadel, K. M., & Boyce, M. (2009). “I don't think this is theoretical; this is our lives”: how erasure impacts health care for transgender people. Journal of the Association of Nurses in AIDS Care, 20(5), 348-361.
Bell, J. (2018, September). What It's Like To Have PCOS When You’re Trans. Clue.
Kaur, S. P., Sharma, S., Lata, G., & Manchanda, S. (2019). Prevalence of Anxiety, Depression and Eating Disorders in Women with Polycystic Ovarian Syndrome in North Indian Population of Haryana. Galore Int J Health Sci Res, 4(4), 61-67.
Kitzinger, C., & Willmott, J. (2002). ‘The thief of womanhood’: women's experience of polycystic ovarian syndrome. Social science & medicine, 54(3), 349-361.
Mishra, K., & Dubey, A. (2014, April). Indian Women’s Perspectives on Reproduction and Childlessness: Narrative Analysis. International Journal of Humanities and Social Science, 4(1), 157-164.
Thorpe, C., Arbeau, K. J., & Budlong, B. (2019). ‘I drew the parts of my body in proportion to how much PCOS ruined them’: Experiences of polycystic ovary syndrome through drawings. Health psychology open, 6(2). 2055102919896238