by Marina Morrow, PhD
Menopause and disability: the gaps
Despite a growth in the past decade in both scientific and popular writings on the subject of aging and menopause, very few, if any, examine the intersections between midlife, disability and menopause, or include the possibility that women with disabilities might have particular needs for information and services during their menopausal years.
This lack of research and health information is troubling given the significant proportion of women who experience some form of disability, whether at birth or later in life. An estimated 20% of the non-institutionalized population in the U.S. and Canada are considered disabled - the majority of whom are women. Women, on average, live longer than men and therefore are more likely to experience chronic health conditions and disability. As well, women with disabilities are living longer and often remain active and involved in their communities throughout midlife. Thus, a growing group of women approaching menopause are women with disabilities, underscoring the need for a deeper understanding of their experiences and health care needs.
Defining disability
The term disability is variously used to describe a loss of physical and/or mental functional capacity or activity and the particular social discrimination that people face as a result of impairment. Having a disability is not synonymous with illness and most disability statistics do not include people who have chronic illnesses. However, some people with chronic illnesses consider them disabling and describe themselves as disabled.
A woman's own definition of disability may depend on a number of different factors, including whether or not her disability is visible and/or the degree to which it restricts her life, and whether or not she chooses to define herself as disabled. Further, a woman may identify as disabled for the purposes of accessing services and as non-disabled for the purposes of normalizing her life and managing relationships.
Every disability is different and there can be great variation within a particular type. Disabilities may be present at birth or appear later in life, due to genetic conditions, accidents, or a complex array of these and other factors. Disabilities may be hidden, developmental, psychiatric, or involve a person's mobility, sensory abilities, speech and learning abilities.
A woman may have more than one disability at a time and the nature of her disability may change over her life span. And women with the same disability may not necessarily classify it in the same functional category. For example, a woman with fibromyalgia may consider it a hidden disability, a mobility disability and/or a psychiatric disability.
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Rita[*] is a 57-year-old woman who was formally diagnosed with chronic fatigue syndrome three years ago, although she indicated that she had suffered symptoms for the past 10 years. In our discussion, Rita emphasized how difficult it was to maintain a good standard of living because of the ways in which her disability restricted her ability to work. Rita spoke about how her loss of income combined with her ill health had affected her ability to maintain social contacts and an active lifestyle. Although Rita felt that she was coping much better since her diagnosis she still suffered from depression from time to time. Rita described herself as having "sailed through menopause" in part because her life circumstances and her disability had been so difficult by comparison.
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The barriers to empowerment
A woman's self-definition ultimately affects how she will frame her experiences of menopause and midlife. For example, whether or not a woman attributes certain emotional and physical changes to her disability or to menopause may depend on her self-definition.
Approaches which emphasize empowerment and choices in coping with menopausal symptoms and other midlife changes are often inadequate for women with disabilities who may face very different challenges at midlife than their non-disabled counterparts. These challenges are often related to the conditions of women's lives where some amount of dependency on others is needed and women struggle to gain or maintain autonomy in daily situations. For example, some women have personal attendants to help with their care. Others with developmental or psychiatric disabilities may spend long periods of time in institutional or group home settings where they have little control over their lives and where decisions may be made on their behalf.
In particular, physicians and family members rarely consider women with disabilities to be sexually active and so their specific needs for reproductive health and sexuality are ignored. Similarly, menopausal symptoms and changes may also be neglected.
A disproportionate number of women with disabilities also experience sexual and physical violence. These experiences affect women's trust of health care providers and their ability to access health care.
Women with disabilities confront a wide range of barriers to health services. Many clinics do not have accessible examining tables or other equipment, making it difficult for women to have screenings, such as PAP smears and mammograms. Disabled women may not be able to perform breast self-examinations and physicians may not do regular clinical breast examinations, thus increasing the risk that an abnormality might be missed.
Women with disabilities also experience economic barriers to empowerment and choice. Poverty is both a cause of disability and a result of it. For example, conditions of poverty make it difficult for people to maintain good health, and can lead to disabling conditions. On the other hand, people with disabilities experience barriers to educational and employment opportunities, which often forces them to live in poverty.
Women are at a higher risk for poverty than men are; this risk increases as women age and is more pronounced for women with disabilities, Aboriginal women and immigrant women. The combination of poor health, lower levels of education, communication barriers and fewer resources limit the access of women with disabilities to health services and health information, including information related to menopause and midlife health. This is particularly true for women with developmental and/or psychiatric disabilities who are even more stigmatized and who often have less access to resources than those with physical disabilities.
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Jayna is a 51-year-old woman who has diabetes, asthma and several types of allergies. Six years ago Jayna relocated from a large urban centre to a rural area in order to care for her young niece after her brother's wife died. Prior to this move, Jayna had a high paying career and an active social life. During the interview she spoke about how difficult this life transition had been for her, in part because it coincided with the onset of menopause. She compared her loss of income and the prestige associated with her job in the paid workforce with the unpaid, under-acknowledged work of mothering. Jayna had found it extremely difficult to integrate into her brother's community and to find paid work; over the past six years she has struggled with depression and suicidal thoughts.
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Added Health Risks [1]
Approaching midlife, women with disabilities often face added risks for conditions such as heart disease and osteoporosis. For example, women in wheelchairs or those with limited mobility find it difficult to exercise. Infrequent exercise - especially the lack of weight-bearing exercises -- also increases the risk of osteoporosis and other bone problems. Women with spinal cord injuries are at particularly high risk of bone loss, fracture and cardiovascular changes and the hormonal fluctuations associated with menopause may exacerbate these conditions. As well, it is harder for some women with disabilities to prepare or have ready access to nutritious foods that are necessary for good health.
Some women with disabilities may experience added difficulties with hot flashes. As well, women with conditions that affect the bowel and bladder (e.g. spina bifida), may find that fluctuating and then declining oestrogen levels increase genitourinary problems, such as urinary tract infections, kidney and bladder stones, or result in poorer kidney function.
There is a need for further research on the effects of hormonal fluctuations on particular disabilities and conditions. For example, Multiple Sclerosis (MS) appears to be oestrogen-sensitive and temperature sensitive; some women with MS find that their symptoms improve when they take hormone therapy, while others do not. The effects of oestrogen on autoimmune diseases are not well understood.
Speaking About Menopause
When women with disabilities speak about their experiences with midlife and menopause, they report a wide range of social, economic, mental, emotional and physical changes in their lives, much like women in the non-disabled population.
However, the complex interconnections between midlife, menopause and the natural course of any particular disability make it difficult for women to attribute the physical, social and emotional changes in their lives to a specific cause.
Women with disabilities also speak about how their disability has made it more difficult to cope with midlife changes. Some women feel that their disabilities limit their ability to enjoy the freedom and excitement that some women experience after midlife changes.
Brenda, who has spinal bifida, feels that her disability has accelerated the aging process:
I feel generally that I am aging faster than my peer group. I've always felt that my life span has been compressed. Most of the markers in your life - marriage, children, career - all of these things have been compressed into a much shorter time frame. I often feel that now at 45 I probably have the body and the musculoskeletal workings of someone closer to 60.
She also noted how her disability affected her midlife changes:
I think it makes some of the symptoms of menopause seem scarier and worse than what I understand the average population experiences. I guess when I have menopausal symptoms I have a scarier reaction to them than I should have because I think maybe they're signalling something else.
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Monique is a 52-year-old woman who was diagnosed with schizophrenia in her early 30s. In the last five years she has also struggled with rheumatoid arthritis. Monique spoke about how her psychiatric disability had made it difficult to maintain an intimate relationship with her husband, who left her several years ago while she was going through menopause and after she had experienced repeated hospitalizations.
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Brenda is a 45-year-old woman who was born with spina bifida. Brenda indicated that her physical health has deteriorated rapidly in the last number of years. Brenda described how she lived with chronic pain in her joints and muscles and how this, combined with the physical changes associated with the onset of menopause, made it impossible for her to work or maintain the social and recreational activities she had loved in her late 30s.
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Finding Solutions
There is a need for more specialized and specific forms of information relating to particular disabilities and the processes of menopause, midlife and aging. For example, in one study, women wanted to know how drugs they took for their disabilities interacted with hormone therapy and whether or not their particular disability would be exacerbated. Since the research is lacking, most practitioners do not have information about how particular treatments interact with specific disabilities.
In order to provide women and health care practitioners with this information, more research is needed which investigates the physical and emotional challenges women with disabilities experience at midlife. Specific attention should be paid to distinctions between different types of disability (i.e., physical, psychiatric and mental) and the age of the onset of the disability. Educating health care providers about the challenges faced by women with disabilities entering menopause is particularly critical so that women are receiving the best care possible and are able to make informed health care decisions.
In addition, the lives of women with disabilities are often marked by poverty, experiences of violence, and social discrimination. In this context, significant midlife events, such as divorce, shifts in care giving roles, and the death of loved ones contribute more complexity to the experience of midlife for women with disabilities.
Despite these challenges, women with disabilities have mobilized for change throughout the world. For example, the late Dr. Sandra Welner, physician and inventor, and the late Shirley Masuda, researcher and counsellor, guided the way to empowering other women with disabilities in their menopausal years. They also helped countless others understand how problems faced by women with disabilities are most often due to a society that refuses to accommodate differences.
Collaborative partnerships between health practitioners, activist organizations like the Disabled Women's Network, and university-based researchers have been formed to conduct research, design more appropriate health care services and to develop appropriate educational resources for women with disabilities and their health care providers. These developments signal that a better understanding of the midlife and menopausal needs of women with disabilities is possible and offer some hope that in the future women with disabilities will not be forgotten.
Marina Morrow, PhD, is a Community Psychologist and Research Associate with the BC Centre of Excellence for Women's Health in Vancouver. Marina teaches Women's Studies at the University of British Columbia.
This article was based on Challenges of Change: The Midlife Needs of Women with Disabilities by Marina Morrow with the Midlife Health Needs of Women with Disabilities Advisory Committee (2000). It can be ordered from the British Columbia Centre of Excellence for Women's Health (604) 875-2633 or visit their website at: http://www.bccewh.bc.ca
For more information
This article first appeared in A Friend Indeed (Jul/Aug 2002), the newsletter for women in menopause and midlife.
