The Bigger Picture: Love and Longing Inside the Bell Jar - Prabha S. Chandra

I am a woman with normal needs even if I am abnormal in other ways. My voices talk to me about sex and I feel tortured by them because they tell me they will do bad things if I think about sex. I do feel better when I have no voices and am on medication. But once I am better, I feel the need to be loved and held, which is not possible. I wonder then, which is a bigger torture – the voices or not being ill?
– Words from a 26 year old woman living with schizophrenia.

There was a time when women with mental illness were institutionalised and only a minority went on to have a partner or get married. Advances in psychiatric treatment have enabled women with mental illness to lead more functional lives and fewer women are now in long term institutionalisation. However, this has thrown open many more challenges for women battling with mental illness including that of handling their own sexuality. A study done at Bangalore among 360 women being treated for a psychiatric disorder revealed that nearly 77 % were sexually active ever in their lifetime while 85 % were sexually active within the last five years. This indicates that even when fighting a serious mental disorder, women continue to have a sexual life associated with its rewards and problems.

This article will focus on some of the issues related to their own sexuality that women with mental illness grapple with, often without solutions or help. Mental illness for the purpose of this paper is being defined as schizophrenia or bipolar illness (including cycles of both mania and depression).

How does mental illness influence the sexual experience of women?

There are enough studies to indicate that women with mental illness have partners, get married, have pregnancies and are sexually active almost at the same rates as women in the general population. However, negotiating this path is often tumultuous and difficult.

There are four important issues that women with a mental illness face in their sexual lives – problems in acquiring and sustaining meaningful relationships related to symptoms of the mental illness; being vulnerable to coercive sexual experiences much more than other women; the impact of psychotropic medications on sexual health, and finally, the lack of specialised, reliable and safe spaces to discuss sex.

Problems in acquiring and sustaining meaningful relationships related to symptoms of the mental illness.

There are two ways in which symptoms of mental illness might interfere with a woman’s sexual life. The first is related to poor judgment and social skill deficits resulting in inadequate sexual negotiation.

The following scenario illustrates the point. M is a 29 year old woman with schizophrenia who wants to have a boyfriend. She talks about wanting to be held, nurtured and touched. M often fantasises of being pretty, smart and having a boyfriend. However her parents do not want to get her married and do not feel that she needs a partner. M herself is also unable to talk to boys in the neighborhood or interact with males at the rehabilitation centre. She gets tongue tied, feels she cannot understand social nuances and becomes awkward. She feels helpless and alone in her predicament.

What M is facing is called a social skill deficit which is part of a schizophrenic illness. Recent theories of schizophrenia indicate that one of the major dysfunctions that inhibit persons with schizophrenia from interacting normally with others is deficits in social cognition.

Social cognition is an important aspect of all social relationships; particularly the art of getting to know another person, communication and negotiation. It is that part of thinking which makes a person sensitive to nuances, gestures and subtle indications of acceptance and rejection. Women (and men) with schizophrenia, depending on the nature of the problem, may become either over-sensitive and hence suspicious of any gesture or may not be able to pick up subtle social cues, which are important aspects of any relationship.

So while M would like to have partner, a romance, and maybe even sex, her illness precludes her from approaching potential partners or makes her over-sensitive to cues.

Poor judgment and loneliness

P is a 25 year old woman with bipolar disorder whose family has abandoned her. Her illness is well controlled with medication; however, P has had two abortions and has had several tests for STDs and HIV. She has multiple sexual partners and occasionally has sex for money.

P says – “I don’t have anyone to call my own and no one cares for me. At least for a physical relationship, men will agree to be part of my life. I know it is momentary and brief, but for that moment, I am the most important thing to this man. I can live with a chain of such moments of people wanting me and me feeling that I belong to somebody. I know that no one in their right senses will have a long term relationship with a woman with mental illness.

As the above self-disclosure indicates, women with mental illness grapple with immense loneliness and solitude. This is imposed on them by society which often alienates them and prevents them from joining the mainstream of social life and networks. Abandoned (often even while living within the family), women may get into relationships without thinking of the consequences, just for a few moments of connection with another person. This may result in trauma through subsequent abandonment or consequences like violence, STDs and HIV.

Illness exacerbations and sexuality

Women with bipolar illness will often report feelings of excessive sexual desire as part of their manic illness and will identify it as being responsible for indiscreet sexual liaisons that might have negative consequences.

The above three situations are often not discussed or dealt with by professionals and patients find it difficult to bring it up- leading to much of the trauma and angst that women with mental illness face.

Medication and sexuality

Several of the second generation of antipsychotic drugs and antidepressants have an impact on sexual functioning, particularly on sexual desire and orgasms (causing anorgasmia). In addition, by causing weight gain, they have a negative impact on self image and on attractiveness further influencing a woman’s sexuality. However, in most situations, an improvement in overall functioning and decrease in symptoms actually enhances one’s self esteem and persons with psychiatric illness have mixed feelings about medication.

Sexual abuse and coercion

Several studies have shown that women with mental illness are extremely vulnerable to sexual coercion. A study done among female inpatients in Bangalore indicated that 30 % of women psychiatric inpatients reported being sexually coerced. The most commonly reported experience was sexual intercourse involving threatened or actual physical force and the most commonly identified perpetrator was the woman’s husband or intimate partner or a person in a position of authority in her community. In contrast to the 30% of women who reported sexual coercion, only 3.5 % of the 146 records indicated that the coercion had been discussed with the doctor or mental health professional.

What was also disturbing was that majority of the women reported repeat victimisation. Western studies have indicated that mentally ill women who are most prone to abuse are those who are homeless and use substances. However, this was not substantiated in our study, where women were living with their families and in their homes. Thirty of the 50 coerced women (60%) reported that they had not disclosed their experience to anyone, and that they had not sought help. Women revealed a sense of helplessness, fear, and secrecy related to their experiences.

Three years ago I was in my sister’s house for a few days. My brother-in-law is not all right. He is very crazy about women. I think even my sister is aware of this, but she keeps quiet. She has two children and has to bring them up. She does not work and that is why I think she is scared. He had an eye on me also. But I never realised. One day I was alone at home. My brother-in-law came. That day he got an opportunity. He did not care, however much I requested. He raped me.” (22-year-old, psychosis not otherwise specified)

Another time, a few people took me to a school. They opened my mouth and forcefully poured alcohol. Then they all raped me one by one. In the morning I was lying there. No one has ever asked me these questions earlier, so I have never told anyone. Now I feel OK and don’t feel distressed about these experiences.” (42-year-old, obsessive-compulsive disorder)

This I have not told anyone until now. But today you are asking me, that is why I told you. But I am not scared. Let anyone come to know about it. I will only say it loudly.” (23-year-old, bipolar disorder, mania with psychotic symptoms)

Our people are all like that. They get their children married early. There will be many children. There are so many people like me. But no one talks about such difficulties. They tolerate all this with their mouths shut. If we tell anyone, we will be losing our own respect. They would say, ‘Is she the only person suffering like this?’ That is why I have not told this to anyone.” (33-year-old, acute psychosis)

Reactions to coercive sex

Women reported a variety of reactions towards their sexual experiences. One woman explained her sexual experience this way:

My mind is not all right for the past 3 years. My mother always says that I roam around everywhere removing all my clothes. I don’t remember now. But I like new clothes and jewelry. I like to dress up well. Once I was in the house alone in the night. Maybe I had not closed the door properly. Some 3 to 4 people just barged in removed my clothes, played with my body and ‘did it’ one after the other. One fellow pressed my breast hard, biting it and my face. But I don’t know who they are because it was very dark. I think they do not belong to our town. They are some rogues. After that, my stomach has become somewhat big. I feel I have become pregnant.

If I tell anyone, they will scold me only. As it is, they always scold me and call me ‘mad.’ Everyone looks down upon poor people like us. Also, if I tell anyone, they will not believe me. What is the use of telling anyone now? Is it not wrong whatever men do? They only blame us. My husband has left me. From here I have to go to my mother’s house. He will not let me stay with him. But I want to go there and live. But everyone thinks I am mad. So will he allow me? If I stay alone also it is a problem. When a woman lives alone, men try to take advantage. (With) a woman like me, it is very easy for them. I am very scared.” (25-years-old, bipolar disorder, mania with psychotic symptoms).

The stories above which have been extracted from an earlier article by the author indicate the poignancy and dilemmas facing women with a mental illness. Being `mad’ they feel makes them a victim, makes them helpless and also leaves them with a sense that people will not believe their experiences because they come out of `madness’. Under these circumstances, possibly the only space they have available is with a mental health professional. However there is often a lack of discussion on sexuality with mental health professionals even in the framework of recovery. Positive stories.

A study exploring sexual lives of people with schizophrenia using a grounded theory approach, found that sexuality was more meaningful when it was not limited to only its physical aspect. Such factors as the presence of intimacy, less confusion about sexual orientation, previous positive sexual experiences and relationships, the quality of current intimate relationships, and opportunities for sexual expression were identified as important contributors to satisfying sexual lives. Men and women living with a mental illness reported that dealing with their sexual lives made them feel more complete as a person and that discussing and resolving their sexual concerns was an important part of reintegration into society.

Reclaiming sexual lives in one’s journey through mental illness

We all need to understand that like everyone else, women with mental illness too need to experience sexual wellbeing. This might not necessarily be only through a sexual relationship but through acknowledging and validating the woman’s sexuality and discussing her concerns related to it. It is also important that families, friends and most importantly mental health professionals realise this in their attempts at helping a mentally ill woman reintegrate into society. Providing a safe place where a woman with mental illness does not feel vulnerable and can express herself freely without having to worry about exploitation is probably the foremost need of today in India. “There is something demoralizing about watching two people get more and more crazy about each other, especially when you are the extra person in the room.”

Sylvia Plath, The Bell Jar, Chapter 2, pg. 14

Key References

Chandra PS, Deepthivarma S, Carey MP, Carey KB, Shalinianant MP. A cry from the darkness: women with severe mental illness in India reveal their experiences with sexual coercion. Psychiatry. 2003 Winter;66(4):323-34.

Chandra PS, Carey MP, Carey KB, Shalinianant A, Thomas T. Sexual coercion and abuse among women with a severe mental illness in India: an exploratory investigation. Comprehensive Psychiatry. 2003 May- Jun;44(3):205-12.

Volman L, Landeen J. Uncovering the sexual self in people with schizophrenia. Journal of Psychiatric and Mental Health Nursing. 2007 Jun;14(4):41-17.

Dr. Prabha S. Chandra
, MD, MRCPsych, is a medical graduate from the Lady Hardinge Medical College, New Delhi and a postgraduate in psychiatry from the National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, India. She is currently a professor of psychiatry at NIMHANS. Her research focuses on women with mental illness, especially where it interfaces with sexuality, reproduction, motherhood, violence, and life cycle issues.