| Staying Well Together: Social Support and Well-Being Among Lesbian Couples in Manitoba
J. Mitchell & Winnipeg Gay/Lesbian Resource Centre
This research examines experiences of health and social support among some lesbian couples in Manitoba to gain an understanding of their experiences coping with an illness or disability, and the social support in their lives. The study focuses on lesbians' voices--as couples and as individuals--and the stories they share about their experiences trying to stay well together.
Knowing how important social support is in terms of maintaining well-being, and assuming that lesbians often experience isolation as a result of being open about their sexual orientation, the research focusses on the unique experiences of lesbian couples who are/were ill or disabled. Understanding that gender and other factors around social and physical location are key determinants of health, the study explores sexual orientation as another key factor influencing experiences of illness and well-being.
The goal of this study is to gain an understanding of the experiences of lesbian couples coping with an illness or disability, and the social support in their lives. The research is based on interviews with lesbian couples who have dealt with, or currently deal with a serious health issue in their relationship.
Interviews included questions about relationship dynamics, health issues, social support, gender, networks, well-being, "outness" and healthy lesbian relationships. Interviews probed how lesbians supported each other through difficult times, how they negotiated support from their networks, and how the experience was influenced by their status as lesbians and women.
Between June 1998 and October 1998, interviews were conducted with 15 different couples, often together with their partner first, and then separately, although some women participated only as individuals, or only as part of a couple.
The sample was obtained through snowball techniques. Interviews were conducted with 15 couples, including three rural couples and one individual rural woman, and eleven couples from Winnipeg. This sample is broad enough to learn about the conditions which shape the lives of lesbian couples coping with illnesses and disabilities, and their use of supports.
At the end of the data collection process, interviews had been conducted with three rural couples, one individual woman from a rural area, and eleven couples from Winnipeg.
Participants range in age between 25 and 50 years old. Eight of the women have children. One woman is Aboriginal, and the rest of the women are White. Education levels range from Grade 8 to completed Masters degrees. Of the participants, two women are working on their Ph.D., there are four women who had completed or were completing Masters degrees, eight women have completed a Bachelors degree, five women have started or were currently working on their Bachelors degrees, six women have college training, two have their Grade 12 diplomas, and two women have education lower than Grade 12.
Most of the health conditions that the women describe in the interviews
are chronic in nature. Examples include depression, multiple sclerosis,
fibromyalgia, chronic pain from previous back injuries, alcoholism,
polycystic kidney disease, herpes, and psoriatic arthritis. Several
of the chronic health issues are also characterized by serious acute
periods as well. A few women had dealt with, or were dealing with acute
health conditions (e.g., cancer, and attempts to conceive a child).
During times of wellness, the four aspects of social and physical location (sexual orientation, gender, being a supportive relationship, and rural/urban living) shape how participants think about health and illness, their involvement with social supports and social networks, and their interactions with health care professionals.
However, when an acute period of a serious health issue arises, these women find the health issue itself so significant, that it becomes the focus through which social and physical location, social support and social networks, and health care encounters are viewed and negotiated.
Women's health and well-being, and their ability to receive positive health care and social supports, are directly influenced by their social and physical locations. In this study, four key features of social and physical location are identified as gender, sexual orientation, being in a relationship, and rural/urban residence.
Gender and Sexual Orientation
Gender and sexual orientation are so closely linked for most lesbians that it would not make sense to discuss the two factors separately. Being a lesbian and being a woman influence women's daily lives, and shape participants' experiences of health, relationships, and social support in a variety of ways.
For many women, gender impacts on experiences with health care practitioners, and in many cases, unfriendly treatment came about firstly because they were visibly women, and assumed to be a nuisance. They may also have been treated poorly because they were a same-sex couple (which may be invisible to some).
Participants face the double-jeopardy of being women and lesbians. The factors are closely connected, and have a bearing on many aspects of women's lives, including their health, how they may provide support, and how they are received by service providers. Even though participants may, at times, take for granted that they are women and lesbians, through the interviews, they were able to begin to think about the role that gender plays in their lives together as lesbians. When one partner is ill, the couple's interaction with the medical system, and their need to seek support and be supportive are increased. Attempting to access support or health care may lead lesbians to situations in which that taken-for-grantedness is disrupted, and they must face the reality of receiving support and care from a society which is constructed by and for heterosexual men.
Being in a Supportive Relationship
Chronic health issues and their effects on relationships vary from couple to couple. Due to the fact that chronic problems are ongoing, they can lead to intense stress, strain and frustration in a relationship.
When one partner is ill or disabled, balance in the relationship and everyday living often has to be shifted. Most women say they are able to clearly articulate their needs for a change, and discuss these shifts in power and balance openly together. It is difficult to feel as if one is dependent on another person, thus it is helpful if the well partner is understanding, and realizes that this imbalance in power is necessary during the acute stages of an illness or disability, but is, in most cases, temporary. Where relationships are not supportive, or when the stress of dealing with health crises overrides the ability to be a supportive partner, they do little to help a person maintain well-being.
Many participants valued their partners tremendously, and feel they
are in quite healthy relationships. Many even found that their commitment
to each other and the relationship was strengthened as a result of struggling
through a health issue together. One of the biggest fears, then, for
any couple that has faced a serious health crisis, is the fear of death,
and being alone.
Living in a Rural or Urban Setting
Living in a small rural area may inhibit lesbians from seeking social support and health care, as they may fear a homophobic response to their disclosure. Those lesbians in rural areas who are not out may fear that confidential personal information will travel around the town very quickly if they come out to a service provider. Social networks are as important to women in rural areas as they are to women in the city.
While rural women say that having a group of friends that they can be open with is important to them (particularly when they are unwell), they do not expect to have many other lesbians in their networks. They agree that it is rarely possible to have a network of other lesbians in a rural area. Most often, women travel to larger towns or cities, or have a network of straight people close-by.
Health and Well-being
Experiencing a major health issue creates all kinds of stress and additional
concerns for women, and causes them to think more carefully about many
aspects of their lives, such as the importance of being well. During
times when health issues are particularly acute, stress levels are raised,
and the illness or disability seems to affect most other things. Women
worry about a variety of issues, enter periods of change, and begin
to view their lives and their health differently.
Social Support, Social Networks and Outness
Most often, women cite other lesbians as the members and providers of support in their social networks. In almost all cases, friends are mentioned before family members and after partners. Having a supportive social network is extremely important for the participants--especially during health crises. When family support is present, many women still claim they are emotionally closer to their "chosen family" of lesbian friends than they are to their families of origin. Almost every one of the women mention how satisfying it is to have friends to talk to, go out with, or depend on for other types of support. Some participants do note their disappointment in the support they receive from friends when illness is ongoing and chronic, as compared to when there are acute health problems.
Women find that when families of origin (i.e., parents, children, siblings) are in their social networks, they generally provide instrumental support (e.g., childcare, cooking meals) and informational support. Close family members are also able to provide emotional support.
Almost every woman in this study can think of at one "weak tie" in their social networks. Weak ties offer a new and different person to talk to about all of the stress that is going on in one's life. They may offer a new perspective, a unique type of support, and simply a break from the everyday world of living with a serious health issue. Participants are usually out to their weak ties about their sexual orientation and the health issues. For some participants the weak tie is a family member with whom they are not ordinarily close; for others, it is a therapist; for still others, it is an ex-lover. Weak ties provide unexpected emotional support, provide money, or gather important information about health conditions.
Many women who are in the closet about their relationships cannot seek out the support of some people, like family, because they have not come out, or fear a negative response. Being closeted and feeling unable to ask for support during an extremely stressful and difficult time makes the entire experience even more frightening and invisible.
Women who are not comfortable being out in all aspects of their lives are often unsatisfied with the size of their social networks and the support they receive from them. While other aspects may contribute to being unhappy with support from a network (e.g., living with a long-term chronic illness, and having support fade away), being closeted does not allow women to feel comfortable accessing the social supports they want and need during health crises. Some who experience a lack of social support and a smaller network than they would like, attribute it to the larger structure of heteronormativity.
Social networks, and the support they provide are also key factors which shape participants' experiences of health and illness. Women receive support from partners, friends, and family. The people in their networks are mostly other lesbians, and this may be due to the fact that they are out to them, and that because they understand the lifestyle, and can provide affirmation of experiences. Women who feel adequately supported by their social networks, found their experiences with illness/disability easier to handle.
Being in a position to be out in one's life about orientation changes the nature of social support. Women who are less out than others tend to have smaller support networks, and feel less secure in seeking support out. Some women, who were more closeted before the onset of health crises found themselves becoming more comfortable disclosing their orientation to friends, family and other supports later. While most participants are out to the people in their support networks, their networks may be smaller than they would like. In order to get the support they need, couples often need to come out about their relationship, and the struggles they face. Feeling as if one's social roles require one to stay closeted makes the experience of supporting a partner with a serious illness much more complex.
While single lesbians are often invisible, and are not identified by care providers and others as such unless they choose to "come out," those lesbians in relationships dealing with health issues most often identify their partner as their main support person. Lesbian couples may attend medical appointments, visits to hospital emergency rooms, counselling, and support groups together, and while they may or may not come out during these interactions, some encounters are nonetheless awkward. Many women in the sample are out to at least some people, some women are out to their doctor, and still others are not out to more than a few close friends.
Encounters with both informal and formal supports such as health care providers may be uncomfortable for lesbian couples whether they choose to come out or not. Some women may not come out because of negative responses to disclosure in the past, or because of their own fear of rejection or poor quality care. Lesbian couples' interactions with health care providers may be negative, and they may not access formal supports which are based on the premise of heterosexuality, such as a "spouse's support group." When they do come out as partners, some couples have been pleasantly surprised with positive responses from care providers, while others have encountered confusion, and firm heterosexist assumptions, which do not make disclosure a smooth process. The study reveals that outness, an issue that was not as clearly articulated at the beginning of the research, affects many aspects of lesbian couples' lives, particularly while they cope with a difficult health issue.
Some women are afraid that if they come out to their health care provider, they may receive a negative response, the encounter may become awkward, and this will lead to substandard care. In the situation of dealing with serious health circumstances, most women are focussing not on their orientation, but on how to get well, however, the issue of coming out is still a salient one.
Women who are not out at work find it difficult to take time off to attend medical appointments with their partners, as they cannot come out and explain the real reason to their employers. Partners who are not out, but can take the time off work to attend appointments, may opt out of attending appointments together in order not to out themselves or their partners to the medical professionals. Most women can think of at least one instance in which they have been faced with confusion, awkwardness and heterosexist assumptions by service providers about their lives. Having to explain about one's lifestyle, when the goal is simply to locate services is annoying, tiring, and unfair.
A lack of understanding of lesbians' lives stems from a lack of language that acknowledges the differences in these lives. Many women are frustrated at the lack of vocabulary in the mainstream world for their lives.
After experiencing negative treatment, because of sexual orientation and any other reasons of social and physical location, many women are learning to become more proactive in demanding good health care, and negotiating their way through the system as women and as lesbians. As women in this study suggest, it is difficult to pinpoint what homophobic behaviour looks like, other than the blatantly obvious. Many service providers are unaware of how their practices and policies exclude lesbians and their families from accessing services, and engaging in comfortable medical care. Education to service providers about the issues of heterosexism and homophobia will encourage their sensitivity to different lifestyles and family types.
Lesbian couples experiences of dealing with serious health issues are often invisible. Their experiences together might not be acknowledged when they seek social support from those outside the network, or when they visit health care providers together. While many of the women say they are fairly comfortable with the amount and types of people to whom they are out, many lesbians do still negotiate most interactions in their daily lives.
Very few lesbians feel comfortable speaking openly to all the people
in their lives about their experiences as lesbians in the world, and
women who deal with health issues. Some lesbians choose to stay in the
closet with care providers, and indeed, it is not always necessary or
appropriate to reveal one's sexual orientation in everyday life situations
or encounters with care providers. But when lesbians do come out, the
fact that understanding, protection, validation, and inclusive language
are not there to legitimize their relationships, and the different stressors
they face, means that the realities of their lives are not being acknowledged.
When lesbians are sick, disabled, or dealing with some sort of serious
health crisis, they do not want the focus of health care providers to
be on their sexual orientation, yet they may want it known that their
partner is their main support person. It is often a complicated process
for lesbian couple to come out, maintain safe, comfortable interactions
with their health care providers, and focus on becoming well again.
Worries and Uncertainties
Women who have children worry about how their children cope when someone in the family deals with serious health issues.
Almost all of the women who deal with a health issue, whether it is chronic or acute, fear that it will get worse, that it will return, or in some cases, that they themselves, or their partner will die because of it. Making long term goals may be challenging or frightening, because at the back of their minds is the prospect that one partner might get sick again, and the plan will have to be changed.
Many women experience physical changes in their bodies after dealing with a health condition, and describe dealing with new or different body issues which are frustrating and overwhelming. Women found that they began to see their bodies in a different way, or to "have a new relationship with their bodies" after dealing with health issues. Adjusting to a body that does not look or work the way it used to before the health onset of the health issue is rarely an easy shift to make. Many women report dealing with this issue.
Sexual intimacy often changes, or takes on new meaning in the lives
of women after they or their partners have dealt with a serious health
issue. Some women are worried about their partner's physical comfort
level after a particularly unwell period, and intimacy may become strained
due to the fear of hurting the "sick" partner. Sometimes it is difficult
for couples to shift back into the levels or expressions of intimacy
that they shared prior to the illness. Sometimes dealing with a health
issue directly affects the ill/disabled woman's experience of sexual
Limited literature currently exists which theorizes about lesbians' experiences of social support and well-being. There is, however, a wealth of literature which describes the positive effects of social support on stress and health in the general population. (Berkman & Syme, 1979; Cobb, 1976; Dean & Lin, 1977; Gore, 1985; House, 1981). Th project reviews past work on social support and its health benefits, and adapts it based on feminist principles to make it inclusive of lesbians. If social support is considered to be a buffer to the stress of living in a marginalized and often hidden society, then it is fair to assume that without this buffer, the well-being of lesbians would no doubt suffer.
According to House (1990), social support consists of interpersonal interactions that include one or more of the following: emotional support (feelings of empathy, love, trust, caring and support), instrumental help (aid in kind, exchanges, money, labour and time), information (advice, strategies, and suggestions for coping), and appraisal support (affirmation, feedback, and social comparison).
Since the WHO's broad definition of health, there has been an increased emphasis on patients as social beings. Social health is an important concept in the field of Health Sociology, and is described as "that dimension of an individual's well-being that concerns how [s]he gets along with other people, how other people react to [her], and how [s]he interacts with social institutions and societal mores" (Russell, 1973:23).
Social health may have different meanings for women of different social locations. Lesbians, for example, may not have control over all aspects of their social and physical location, and many of society's attitudes and fears about homosexuality may have negative effects on lesbians' well-being. It is known that people who are well-integrated into their communities tend to live longer, have a higher resistance to illness, and recover more quickly than those people who are socially isolated (Berkman, 1979; Cobb, 1976). Negotiating an illness as a lesbian (and possibly as a woman with another minority status) through the existing medical system may lead to emotional and social stress, suggesting the importance of the existence of social support and social networks. Most research on social support is still based on heterosexuals' experiences. Studies of alternative sexual orientations, or differing stressors faced by lesbians in society have not been carried out by those researching social support. It may be the case that in times of stressful life events, lesbians are often faced with the reality of a society that is not yet entirely accepting of homosexuality, and negative responses to disclosure may add even more stress. Evidence suggests that support from formal helpers is not always accessible to lesbians, nor is it sensitive to the different life experiences and stresses faced by lesbians (Deevey, 1985; Stevens, 1993; Stevens, 1994; Trippet & Bain, 1993; Lucas, 1993).
The social environment is recognized by most theorists as a complex structural, cultural, interpersonal and psychological system. Lesbian couples' social systems may induce and/or reduce stress, depending on the external stressors and other factors in their lives. Learning more about the social systems of lesbians, and identifying patterns within them is crucial to learning about the contextual nature of lesbian couplehood, and to lesbian health and well-being.
Lesbians' health needs, concerns, and behaviours have been largely ignored within the male dominated institution of medicine (Rosser, 1994). Often, the failure to recognize lesbians' health needs comes from the assumption that lesbians do not exist, that their health issues are the same as those of heterosexual women, or - less frequently - that lesbians share the same health concerns as gay men (Rosser, 1994). None of these assumptions is accurate, and recent literature in women's health suggests that lesbians have different health needs, concerns and behaviours than heterosexual women (Horsley & Tremellen, 1995; Ramsay, 1994; Rosser, 1994).
Several issues in lesbian health have been subject to biomedical research in the past five to ten years. Lesbians, like heterosexual women, develop many forms of cancer, yet research indicates that lesbians (who generally have had fewer sexual experiences with men) may be at a lower risk of developing cervical cancer than heterosexual women (Rosser, 1994). Very alarming, however, is the incorrect assumption held by many lesbians and health care practitioners alike that lesbian women do not need pap smears (Horsley & Tremellen, 1995; Ramsay, 1994; Rosser, 1994). As pap smears are generally conducted during a visit in which contraception is to be provided, this examination seems to be targeted only towards (hetero)sexually active women (McClure & Vespry, 1994; Ramsay, 1994; Rosser, 1994). Lesbians are said to visit their gynecologists far less often than heterosexual women, at an average of once every 21 months compared to heterosexual women's average of once every 8 months (Rosser, 1994). Thus, lesbians are less likely to receive complete gynecological care, which includes being screened for breast, uterine, and cervical cancer. Lesbians are led falsely to believe that they are at a low risk of sexually transmitted diseases and cancer, while in fact, medical evidence suggests that there is a risk of contracting HIV and other STDs. Lesbians may have a higher susceptibility to breast and uterine cancer than heterosexual women (McClure & Vespry, 1994; Rosser, 1994).
Lesbians tend to have children less frequently than heterosexual women. Some research suggests that there is a higher alcohol consumption among lesbians. And, because of the lower emphasis on traditional beauty and body image in the lesbian community, more lesbians than non-lesbians tend to be overweight (McClure & Vespry; 1994; Rosser, 1994; Trippet & Bain, 1992). Any combination of these factors tends to increase the risk of developing breast cancer, however, infrequent visits to a primary care physician or gynecologist may not allow for early detection of breast cancer in lesbians, or health problems related to the previously mentioned health behaviours.
All of the above advances in research are very important, however one of the goals of the "health determinants" approach to women's health is an attempt to situate women in their social milieux. In the "Overview of Women's Health," a synthesis report of the National Forum on Health, Phillips' (1995) statement about women's health is quoted:
Women's health involves women's emotional, social, cultural, spiritual and physical well being, and it is determined by the social, political and economic context of women's lives as well as by biology.It is essential to acknowledge diversity and inequality within the heterogeneous group, "women." Within the health care system and social services, women have experienced various forms of discrimination (e.g., sexism, racism, classism, ableism) and for some lesbians, these factors are compounded by heterosexist assumptions and homophobic attitudes.
If health care systems and social services are microcosms of the society
in which we live, then it is reasonable to assume that lesbians seeking
help may experience exclusion, isolation, mistreatment, and ignorance.
Health practitioners and social service providers are beginning to realize
that women's social locations within society tend to have an impact
on their life chances and on their well being. Many lesbians feel isolated
from mainstream society, and most lack access to culturally sensitive
services. Lesbians might be disheartened to learn that in the "Special
Populations section in the "Overview on Women's Health," the short
passage on "other minority women" does not include lesbians. The social,
political and economic realities of lesbians and their health in Canada
are neglected in a report that will influence health policy and practice
in Canada, as it enters the 21st century.
The experiences of lesbian couples seeking support and care around serious health issues is very complex. When the women in this study deal with difficult health issues, they need social support, and they must interact with health care providers. While there is a range of experiences, some women still identify homophobia and assumptions of heterosexuality as barriers to accessing support and health care. Heterosexism exists in many ways - policies (e.g., not allowing a same-sex partner to sit in the emergency room), medical assumptions (e.g., if a any woman has stomach pains, there is always the possibility that she might be pregnant), or intake forms (e.g., there is no language or category for same-sex partner). Seeking social support and interacting with health care and service providers due to a serious health issue are influenced by participants' social/physical locations, as well as how out they are, and to whom.
Lesbians are women, and many women still do not find their experiences with health care professionals particularly empowering or positive. Yet as the participants in this study indicate, some women are becoming more assertive and proactive with regards to their health. The data suggests that these lesbians in couples are better able to negotiate their way through the system together, developing strategies for how to deal with medical professionals. During times of extreme stress (e.g., dealing with a serious health issue) women do not wish to focus on issues of location like sexual orientation or gender, but only want to achieve health and well-being. During times of illness or disability, lesbians seek knowledge, social support, and positive health care from partners, networks, and professionals in order to maintain well-being. It is clear that positive social support from both informal networks, and formal systems is very beneficial to coping through an illness and maintaining well-being.
There are problems for lesbians, particularly heterosexist language, and the invisibility it creates for lesbians. Assumptions of heterosexuality exclude lesbians and their families, but it seems lesbians are forging ahead to challenge some of the limits and barriers themselves. Many of the lesbians in this study are persisting to have their voices heard, and their needs met.
The sample in this research is unique, in that it portrayed the experience of couples. It seems that couples who have been together for a few years, and who have faced some challenging issues in their relationships already, learn to negotiate the system together, and create strategies to cope. Lesbian partners can rely on each other as their main source of support as they try to seek care, and try to stay well together in the process.
The limits to this data must be acknowledged. This sample was self-selected, and included the typical types of people who respond to calls for participation in research: those who are well-educated, middle class and, in this case, out about their sexual orientation. The women with who took part in the research are those who do not internalize homophobia or heterosexism, but continue to look for the quality care they feel they, like everyone else, deserve. Those women who struggle with internalized homophobia, and who are not out, would not step forward to participate in a study such as this one. There are concerns that these particular women who would be unlikely to respond, and who lead closeted lives may still feel the effects of internalized homophobia, and may avoid seeking proper health care based on long-held assumptions that they would be judged based on their sexual orientation.
The two goals of this research project were to create new knowledge
and theories on lesbian health, and to initiate social action in the
lesbian community. New, hopeful knowledge has been learned from the
15 couples in this sample. Many participants indicated that they are
interested in continuing to share knowledge about heterosexism, and
strategies to deal with it in health care settings. Given the limitations
of a small sample, and given how little we know about lesbian health
in general, it would be impossible to generalize these findings to the
larger lesbian community, but this study acts as a new beginning point
both for more research on lesbians, social support and well-being, and
for social action in the lesbian community.
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