I have lost my Identity: Disease Management Challenges of the Women Suffering from Polycystic Ovary Syndrome (PCOS)

Sample

Entire data were collected in the out-patient department (OPD) of Sri Maharaja Gulab Singh Hospital (SMGSH) in the Jammu district of the erstwhile state of Jammu and Kashmir in India. Ethical clearance was sought from the Institute Ethics Committee of the Government Medical College Hospital, Jammu, which is the parent hospital of SMGSH. Informed consent was sought from all the 41 respondents who participated in the study. Patients visiting OPD section of the hospital were contacted for the in-depth interviews which also facilitated field observations. Therefore, purposive sampling method was employed in which 41 female respondents suffering from PCOS were interviewed for a duration ranging from 40 minutes to 1 hour.

Data Collection

In-depth interviews were conducted by using semi-structured interview schedules which consisted of questions related to the socio-economic and demographic profile of the respondents, their eating and workout routine as a part of their lifestyle habits, and health-seeking behaviour of the respondents. Pseudonyms have been used to reproduce dialogues of the respondents and secrecy of the data has also been ensured.

Data Analysis

Conversation with the respondents took place in Hindi or Dogri (regional language) language. Additionally, an observation diary was also maintained. Being aware of both the languages and English language as well, authors themselves translated all the interview scripts into English language. Collected data was then analysed using constructivist grounded theory, and narratives are reproduced in the study using pseudonyms. Table 1 reflects socio-economic and demographic profile of the respondents.

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Table 1

Profile of the Respondents.

S. No.	Pseudonym	Age	Profession	Religion	Marital Status
1	Supinder Kour	25	Housewife	Sikh	Married
2	Radhu Kumari	24	Housewife	Hindu	Married
3	Meena Devi	27	Housewife	Hindu	Married
4	Ramya	28	Student	Hindu	Unmarried
5	Afia	25	Student	Muslim	Unmarried
6	Neha Mahajan	21	Student	Hindu	Unmarried
7	Pretie	22	Private Teacher	Hindu	Unmarried
8	Tanya Ghai	17	Student	Hindu	Unmarried
9	Nikhat	18	Student	Muslim	Unmarried
10	Anita Mahajan	39	Government Employee	Hindu	Unmarried
11	Mamta	29	Housewife	Hindu	Married
12	Fariha Khan	16	Student	Muslim	Unmarried
13	Shazia	34	Housewife	Muslim	Married
14	Niti	20	Student	Hindu	Unmarried
15	Shikha Manhas	19	Student	Hindu	Unmarried
16	Deepika Choudhary	24	Student	Hindu	Unmarried
17	Geeta Kumari	20	Businesswoman	Hindu	Unmarried
18	Shameem Malik	21	Student	Muslim	Unmarried
19	Stuti	24	Housewife	Hindu	Married
20	Rohini	20	Student	Hindu	Unmarried
21	Rajni	21	Student	Hindu	Unmarried
22	Priya Kapoor	31	Housewife	Hindu	Married
23	Poonam Khatri	24	Housewife	Hindu	Married
24	Deepti Sharma	32	Housewife	Hindu	Married
25	Farida	19	Student	Muslim	Unmarried
26	Sukandya Sharma	29	Government Employee	Hindu	Married
27	Rekha Mistri	19	Student	Hindu	Unmarried
28	Rashi	19	Student	Hindu	Unmarried
29	Priya Jain	21	Student	Jain	Unmarried
30	Shilpa Sharma	14	Student	Hindu	Unmarried
31	Sumita Andotra	18	Student	Hindu	Unmarried
32	Jyoti Kalsotra	36	Government Employee	Hindu	Married
33	Vandana Khanna	16	Student	Hindu	Unmarried
34	Deepika Kumari	29	Government Employee	Hindu	Married
35	Deeksha Khanna	27	Student	Hindu	Married
36	Astha Dutta	16	Student	Hindu	Unmarried
37	Prarena Kumari	37	Student	Hindu	Widow
38	Shreya Koul	26	Student	Hindu	Unmarried
39	Shreshta Gupta	28	Student	Hindu	Unmarried
40	Tabassum Bhat	19	Student	Muslim	Unmarried
41	Gita Vaid	25	Student	Hindu	Unmarried

Source: The authors.

What Is Going on With My Body

PCOS has intense impact on the life of the respondents which is manifested in the form of dilemma and crisis. A peculiar scenario, which was observed during the study, was that majority of the patients did not know that they were suffering from PCOS. For such patients, entire course of discussion took place in terms of the symptoms of the disease. In total, there were 31 respondents who did not even know the name of the disease. These patients were interviewed by asking questions in the context of the persisting symptoms of the disease. In fact, respondents themselves also focused on the symptoms only. As Rashi, aged 19, narrated her experience:

I consulted a dermatologist for acne treatment, and he referred me to a gynaecologist. Since then, I am seeking treatment of the gynaecologist, and she told me to reduce my weight instead of prescribing any ointment. I do not know what this disease is.

Radhu Kumari (24), who got married recently, stated:

I had irregular periods ever since I remember. However, I found it to be a blessing which spared me from going through the ordeal of bleeding every month. After my marriage, my mother-in-law noticed that I was not having regular menstrual cycles and she also observed that I was not conceiving either, so she took me to the gynaecologist who told me that irregularity of menstrual cycles is stopping me from having a baby.

When asked about the disease she was suffering from, Sumita (18), who was in her third year bachelor’s degree, stated:

My monthly cycles are not regular for quite some time, and I am worried about it. Doctors say that I need to cut down the consumption of junk food and have to reduce weight. How this all is related to my irregular periods; I do not know.

Direct association of PCOS with menstruation process is one of the main reasons that it is considered a stigmatising disease by the respondents in the present study. This observation adds another dimension to the existing literature which says that PCOS is a stigmatising disease because of the lack of confidence and body disfigurement (in the form of acne, hirsutism and obesity) resulting due to the onset of PCOS (Brady et al., 2009; Farkas et al., 2014; Kitzinger & Willmott, 2002). Respondents in the present study preferred not to discuss about PCOS mainly because of its direct association with menstruation. Montgomery (1974) analysed biological, psychological and sociological theories referring to the origin of menstrual taboos. Biological explanation says that production of menstrual toxins is related to the spoilage of eatables and, therefore, women were restricted from participating in the day-to-day activities; from psychological point of view, mere idea of a menstruating vagina was thought to be the reason enough for detesting menstruating women; and sociological theories state that in order to relax women from the burden of household chores during menstrual cycles, taboos were associated with it, and this is the reason that relationship of menstrual taboos is inversely proportional to the nuclear households and monogamous marriages. Johnston-Robledo and Chrisler (2013) stated that menstruation is an illustration of all the three types of stigma which were explained by Erving Goffman. Women represent less powerful section of the society, and more powerful members (men) associate a feeling of disgust and loathe with it because of which females tend not to discuss it with anyone except immediate female members of their family. Kissling (1996) analysed social process associated with menstruation process and the way it is dealt with in the society. She observed that adolescent girls tend not to discuss it openly with anyone and use various euphemisms while talking to each other about menstruation.

It is mainly due to this fear of being labelled, that patients in the present study and their family members tend to remain tight lipped about this disease and preferred not to discuss it with anyone. In fact, majority did not discuss it with any of the male members.

Shreshta (28) mentioned that onset of menarche in her case was quite early which became a matter of concern for the whole family.

I was just nine when I had my first periods. That time I was the only child of my parents, and it became a matter of grave concern for them. I was taken to the doctor who told them that I would never be having normal periods. Since then, menstruation became an open topic in our family. And now I do not hesitate to talk to my father about my condition. However, I avoid talking about it with less familiar people, especially males. Because there are chances that they might not be able to understand my situation and try to mock me.

Bharathi et al. (2017) in their study of South India observed that PCOS in urban areas is much higher than it is in rural areas and is inversely proportional to the level of awareness of PCOS among respondents. The results of their study show that 20% of the rural population was symptomatic and had not visited a physician yet. Of this entire rural sample, 69.5% had oligomenorrhea which was not reported to any doctor. Those who had symptoms of acne and hirsutism were least bothered about it. This resonates with the results of the present study where respondents opted for mechanisms like bleach and face waxing and, therefore, it was not much of a concern for them.

Ramya visited gynaecologist because she put on weight and was suffering from obesity. She talked about her facial hair:

I use bleach to hide my facial hair, though they are not much of a concern. I am worried only about my increasing weight. If I keep putting on weight, then no one will marry me.

Geeta Kumari assisted her father in his business. She was also not concerned about the hair growth on her face, about which she mentioned:

I use thread to remove my facial hair. Growing weight is my only major concern. I am of marriageable age and because of my excess weight it might get difficult to find a suitable boy of my choice.

Therefore, negative self-image does concern respondents in this study. Unmarried women were worried about excessive weight because they were worried about their marriage, and fear of future infertility and irregular periods made them feel incomplete and less feminine. Almost all the respondents with even minor problem of hirsutism had one or another mechanism to manage it. PCOS was more of a social situation than a medical situation for the respondents.

Only Farida (19) found it difficult to cope up with the problem of hirsutism and avoided going out. She said:

I do not like to go out with my friends. My facial hair is the most disturbing thing I am facing right now. I consulted dermatologist as well which was of no use, and he referred me to the gynaecologist. I do not know of how much help is this treatment going to be.

Shikha Manhas (19) thought of herself to be less of a woman due to irregular periods:

I feel myself to be incomplete and unhealthy because my periods are not normal. When I look at my friends, this feeling gets strengthened that I lack femininity and I am diseased.

Tanya Ghai was going to appear for her higher secondary exams in sixth months. This made her remained pinned to her chair in order to study. However, this was taking a toll on her health as she was stressed because of studies, and longer sitting hours made her life sedentary which was increasing her weight. She narrated her problem as:

I have to perform well in board exams. This is why I stopped playing with my friends. My mother says that it is a matter of few months, then I will be free to play and hang out. However, suddenly my periods got irregular. Earlier, I used to get periods within 30–40 days whereas now it has been two months since I had my periods. Doctor says that I should reduce my weight, and that needs time. I attend coaching classes after the school and after that I need time for self-study as well. I do not have even 15 minutes to go for walk.

Personally and socially constructed experience of the disease has a bearing on the health-seeking behaviour of the respondents. Health-seeking behaviour refers to the process of disease management which is being sought by the patient (Oberoi et al., 2016). It mainly depends upon the knowledge level of the disease. More than physical distress, PCOS has psychosocial distress in the life of women suffering from it. As it has been mentioned in the earlier sections that women face stigma, lack of self-esteem and incompleteness. Therefore, these women try to manage it in best possible manner.

Indian women suffer from lack of awareness about PCOS. Literature shows that majority of females in the country do not know about the harmful effects of increased weight and physical inactivity (Gouda & Prusty, 2014). Impact of PCOS changes during different stages of life as during adolescence patients suffer from hirsutism and it gets aggravated when it results in infertility during adulthood. However, irregularity of menstruation always remains an important manifestation of PCOS (Pitchai et al., 2016; Rajkumari et al., 2016).

I Just Need a Baby

Concept of ‘docile body’ changes with respect to society and culture. Docile body is the one which is in lines with socially defined ideal body (Barry & Yuill, 2012). This definition varies with respect to sex and gender as well. In the present study, docile body of a woman is something which is not experiencing any medical deformity. Therefore, there should not be any menstrual disturbance and no problem in the acquisition of motherhood. However, being ignorant of the role of excess weight in the onset and management of PCOS, these women seldom try to make an effort to control and manage their weight. They hardly strive to opt for healthy eating habits and physical workout. Mass scale unawareness is the main reason that disciplinary forces of the society in the form of ‘anatomo-politics’ remain unable to compel these women to regulate their lifestyle behaviours. This is a big hinderance in the ‘sick role’ acquisition for the women suffering from PCOS. Therefore, lack of awareness takes a huge toll in the management of PCOS.

Infertility was another major issue which made married childless women to consult gynaecologist for the treatment. There were two unmarried girls as well, who were getting married in a span of few months and seeking treatment so that they could not face infertility in near future. Femininity and childbearing is closely related to womanhood which many women think completes them (Kitzinger & Willmott, 2002). Therefore, married women in the study often felt incomplete due to their inability to bear children. They were asked about their experiences on account of not being able to bear a child. All the married women, except for those who already had children, felt incomplete due to their inability to experience motherhood. Although this question was not applicable to unmarried girls yet, the women who were going to get married soon, mentioned it clearly that they did not want to face infertility in near future and that was why they were seeking treatment for PCOS.

While seeking treatment, patients come across different kinds of suggestions from friends and relatives. When respondents were asked about the suggestions which they received to manage their disease, they replied that they never discussed it with anyone. However, married childless women did receive suggestions pertaining to fertility and were advised to go to a particular godman or suggested to eat one or another thing which could help them to conceive. Respondents said that such suggestions were extremely annoying, and they did not like them at all. About the matter of not discussing PCOS openly just like other diseases, one of the respondents, Neha Mahajan, stated:

Menstruation is not an openly discussed entity in our society, therefore people really have an extremely weird approach towards it. If I happen to explain it to anyone, then there are chances that the person might not be knowing it; and even if I make them understand what this disease is, I am sure that their reaction would be awkward and might make me uncomfortable.

Immediate and long-term complications of PCOS have a grave social impact on the life of women. As already mentioned, it is associated with body self-image and infertility. Pathak and Nichter (2015) studied urban middle-class women in Mumbai and argued that ‘structural vulnerabilities’ upset lifestyle of the adolescents and working women. They have to perform dual role of a family caretaker and that of a bread earner, which makes them overburdened and leads to hyperandrogenism. Structural vulnerabilities of a person exist with respect to their position in the hierarchical order and are the product of structural violence. Structural violence results when a person gets subjected to social inequalities and gets exposed to violence by means of not being able to fulfil minimum basic needs. This kind of violence results due to existing social set up (Quesada et al., 2011; Rhodes et al., 2012). However, women in present study did not have a lifestyle typical of an urban middle-class Indian, yet they were experiencing onset of PCOS, which was an intriguing case and when it was discussed with the gynaecologist, he replied:

Present lifestyle of rural areas is not physical anymore. And pot bellies of rural women are clearly visible, however, unlike Western societies, these women are not concerned about their body disfigurement in the form of obesity. They eat high carbs diet and perform household chores which do not require much of physical labour. And considering their socioeconomic background, it is not possible for us to make them understand the importance of various nutrients (like vitamins and minerals) in food and physical workout. They are highly vulnerable towards lifestyle diseases, and this is why women in rural and peri-urban areas are also highly susceptible to the diseases like diabetes and PCOS.

Meena Devi, aged 27, who was married for 5 years, was also obese. Yet she was neither concerned about her facial hair nor about obesity, her only concern was to have a child. She articulated her experience:

Growth of facial hair and obesity are not problematic for me. I get my face waxed every month. All I am worried about is that I do not have a baby even after 5 years of marriage. Now even my mother-in-law taunts me for not giving them any grandchild for so long.

Similarly, infertility was the main motivation for majority of married women to consult gynaecologist. Motherhood marks the onset of an important phase in the life of a woman which is mainly characterised by ‘self-loss’ as women tend to redefine themselves during the entire course of looking after their child (Laney et al., 2015). Oberman and Josselson (1996) argue that motherhood makes a woman to lose herself in order to evolve and enter into adulthood, which is very significant in the life course development of a woman. Even feminist literature also epitomises motherhood as a defining moment of the completeness of a woman (Kitzinger & Willmott, 2002). Psychosocial factors tend to construct motherhood as the most important event in the life of a woman without which all her purpose of being a woman gets lost.

Purpose of consulting doctor for married women in the present study was to conceive and to have a baby so that they should not become a subject of social mockery. Sweety Ahuja, aged 33, stopped being a part of social gatherings as she missed being a mother so badly that having a glimpse of the children of her friends and relatives reminded her of her own incompleteness.

I do not go to parties and functions, especially birthday parties and mundans [ceremony of the first balding]. Such parties remind me of my own incompleteness. I have been seeking infertility treatment for quite some time, and, if required, I might consult doctors of repute in other states as well. I feel so inferior and incomplete.

Many young women who were married for few months or years also became a subject of atrocities at the hands of their in-laws due to their inability to give birth. Poonam Khatri (24), married for 2 years, was being treated as a domestic help by her mother-in-law for not being able to produce an heir for the family. She stated:

My mother-in-law says that I am of no use as I could not give them a grandchild. Therefore, she treats me like a maid servant and says that I am good for nothing but to work as a domestic maid.

Supinder Kour (25) was suffering from oligomenorrhea and was seeking medical treatment before her marriage as well. She mentioned:

I did not tell my mother-in-law that I was suffering from irregularity of periods even before marriage and was consulting doctor for that. She would insult me and call me a ‘defective thing’, which was imposed on her son.

Fearing such awkward reactions, Deepti avoids discussing infertility with anyone but her doctor and husband.

I can hide that I experience irregular periods but how can I hide that I have not given birth even after 8 years of marriage. This attracts many unwelcoming suggestions that irritate me a lot.

Such incidents lead to the labelling of an illness and the person suffering from it in the society. This labelling has a negative impact on the health-seeking behaviour of the patients as they fear that open consultation might further strengthen negative connotation associated with the disease. This negative labelling is the stigma which gets associated with the patient. This stigma in turn disturbs normal routine of the patient and leaves them ashamed and distressed (Friedson, 1970).

Health-seeking behaviour is also determined by familial experiences which act as a source of knowledge production and dissemination. It was observed in the case of Stuti and Rohini who were real sisters. Stuti was married for 8 months; however, she was not able to conceive even after many attempts. So her own mother took her to the doctor where it was discovered that the irregularity of her periods, which she was facing for many years, was the actual cause of the trouble. After witnessing Stuti’s case, her mother decided to bring unmarried Rohini to the doctor as well because Rohini was also suffering from oligomenorrhea. Onset of fertility complications in the life of Stuti made her mother to be concerned about the future of Rohini as well.

Idea of motherhood has been given extreme importance in all societies and is directly associated with the completeness of a married woman. Even doctors pay more attention to this aspect of the disease. As Niti mentioned:

I was 16 year old when I heard that I had POCS. I knew nothing about it, it was just a situation of irregular periods for me. When gynaecologist talked to my mother, she said that I would not be able to conceive in near future, if this condition persists. I was so scared at the mention of pregnancy at such a tender age that I started crying.

Similarly, Fariha visited doctor because her own mother was also suffering from PCOS and was very well aware of the main symptoms of it. Therefore, personal experiences also work as sources of knowledge production for the patients which determine their health-seeking behaviour.

This Is Black Magic

Afia (25) also felt distressed due to irregularity of periods and even consulted a godman as well. She believed that this was due to the impact of some kind of black magic. Therefore, social impact of PCOS on the life of these women had varying dimensions; however, its onset could not bring much of change to their lifestyles.

Mamta, who was married for 6 years, came to know about PCOS from her sister. She expressed her situation:

My sister works in a hospital, and she discussed my condition with a gynaecologist there. Doctor suspected that I was suffering from PCOS; and without the information of my in-laws, I visited doctor and performed tests which were recommended. Reports confirmed that I had PCOS, and it was the main reason I was not being able to conceive. Long back I told my in-laws that I should consult a doctor to seek fertility measures. However, they said that due to the impact of some black magic, all their daughters-in-law could not conceive in time, so it will also take me few years to experience motherhood. Now I am consulting a gynae without the information of my in-laws.

Not only Mamta’s in-laws believed in black magic but few other respondents as well, and they also believed in consulting a godman as an alternative source of medicine. Friedson (1970) says that layman construction of an illness is driven by many forces as a result of which not everyone tries to seek medical consultation for curing it. It is not necessary that by believing oneself to be ill, one opts only for bio-medical services. Social sanctions and cultural exposure lead them towards a socially more desirable way of treatment. And this course of treatment can or cannot be bio-medical (Friedson, 1970).

Shameem wore a taveez [amulet] to protect herself from the evil eye and to regularise her periods. She believed that buri nazar [evil eye] was the main reason that disturbed the functioning of her body. However, she had a rich history of metabolic diseases in her family and her mother was also suffering from PCOS. Similarly, Nikhat also consulted a godman. In her words:

I do not know why I encountered irregularity of periods. It is absolutely disturbing, and I thought peer saab [godman] could be of great help. So, my mother took me to him. Medication and seeking blessings of the almighty are two different things; however, I just want to regularise my periods by any means.