‘Surviving the Change – Menopause and Women with Disabilities’
Written by Lynne Swanson. This article originally appeared in Abilities Magazine, Spring Issue, 1998. Copyright 1998.
Baby-boom women are discovering a new trend: menopause. Suddenly, hot flashes (also described as “power surges,” “my own personal summer” and “becoming a red-hot mama”) are a fiery topic of conversation. Erratic hormones and calcium are in. Tampons and PMS are passe (we think!).
As Bob Dylan sang over 30 years ago, “The Times, They are A-Changin’!”
For women with disabilities or chronic illnesses, menopause may create unique challenges not experienced by women in the general population.
A woman I know asked her neurologist what the effects of menopause were on multiple sclerosis (MS). After examining his shoelaces, he advised he didn’t know. I was absolutely astonished to hear this, especially because the majority of people with MS (as with other autoimmune disorders) are female. My friend’s conversation began a personal and professional quest for me.
Thirty women replied to a notice I placed in “M.S. Canada.” Many reported blank stares, shrugs, chuckles and “no research” when they asked physicians and counsellors this question.
Like me, most were “appalled at the dearth” of information available on menopause and MS. Women reported being “thrown for a loop” as they struggled to cope with “menopause, MS and me, all mixed up together.”
For women who breezed through menopause, there was little effect on their MS. Others reported relief of MS symptoms with the cessation of menstruation. But for those who had menopause difficulties, it was a crossroads with little information.
The most common difficulty reported was hot flashes, which were especially problematic because of the sensitivity of people with MS to heat.
These women offered their experiences so others could benefit. Coping strategies included exercise, diet, spirituality, meditation, rest, lots of cool showers, hormone replacement therapy, and remedies like acupuncture, dong quai, algae and vitamin B complex. “M.S. Canada” published my article on this. But I soon suspected this issue was not restricted to women with MS. Although there is tons of information on menopause for the general population, I was convinced women with other disabilities were also struggling with a lack of resources through this natural, but sometimes difficult, juncture in their lives.
My suspicions were confirmed when I read a Canadian Press article about diabetes and menopause. In that story, Marlene Habib reported that the effects of diabetes and menopause on each other are confusing. For women with diabetes, hormone fluctuations may make it difficult to keep blood sugar levels stable. These women are often confused as to whether a sudden body temperature change is due to an insulin-related problem or a hormone-related hot flash.
Leigh Caplan, diabetes nurse educator at TRIDEC (Tri-Hospital Diabetes Education Centre) at Toronto’s Women’s College Hospital, says this issue frequently arose in classes with women with diabetes who “couldn’t figure out whether it was menopause or whether it was diabetes which was causing this to happen or that to happen.”
Because of recurring questions, TRIDEC, through surveys and focus groups across Canada, is attempting to determine information needs of women with diabetes and to make material available to them. The centre appears to be a leader in addressing menopause for women with chronic illnesses.
Maria Araujo of A Friend Indeed, a newsletter on menopause published in Montreal, confirms that “many, many conditions” are affected by overlapping symptoms. Based on information they receive from subscribers, Araujo says, “When hormone changes start to take place because of perimenopause, it seems to exacerbate any existing condition or predisposition to certain things.”
Although Araujo is “not aware of any systematic study on the correlation between menopause and chronic conditions,” A Friend Indeed has had reports of difficulties with allergies, hyperthyroidism, fibromyalgia, arthritis and other conditions through menopause.
Shirley Masuda, community researcher with DAWN (DisAbled Women’s Network) in Vancouver, says her group is concerned about this issue, but they haven’t been able to obtain research money to investigate.
Masuda believes that menopause in women with disabilities is not receiving adequate attention because of what she calls “disability castration syndrome.” Masuda says that “once a woman becomes disabled, she’s not supposed to be sexual any more. Her counsellors, doctors, even her friends no longer want to talk about sexually related things. Menopause and menstruation all fall into that pot that you’re not supposed to be a woman anymore.
Those issues are out there. There are so many things people don’t want to hear about.”
To address concerns, Masuda suggests talking openly and candidly to other women with disabilities to share with and learn from each other.
Because there is limited information available to women with disabilities specifically, Gail Weber, coordinator of programs for mid-life women/menopause at Women’s College Hospital, advises, “The most important thing is, be informed about what’s normal for menopause.”
Knowledge can be your best ally in helping to assess the impact of menopause (if any) on your disability. Your local library will probably have a wealth of menopause books. A Friend Indeed publishes eight times per year and is packed with amazing information. Your physician likely has useful pamphlets. Other magazines frequently publish information. Consider speaking with a women’s health educator who will be in sync with your needs.
Weber says if you’re 45 or 50 and your menstrual cycles have become irregular, that “should indicate menopause is about to happen.”
Weber stresses that menopause is a normal stage in a woman’s life, representing the end of her reproductive years. The term comes from two Greek words: “meno,” meaning month, and “pausis,” meaning to halt. Menopause simply means the end of monthly periods.
Approximately 15 per cent of women have little or no menopause discomfort. Another 15 per cent experience severe distress. The remaining 70 per cent undergo some discomfort, which literature from Weber’s clinic says “can be managed adequately with patience, humour, support, lifestyle changes and medical/non-medical intervention.”
Weber agrees with Masuda about mutual support. She encourages “having a group you can talk about it with and laugh about it with. Having a sense of humour is very important.”
Weber says that through women’s chats, they “recognize symptoms may be uncomfortable, but they’re not going to last forever.”
Weber is a strong proponent of women being equal partners in their own health care. She recommends seeking out a physician who “respects you, listens to you, understands your opinions and is supportive.”
A common conundrum for menopausal women is whether to take hormone replacement therapy (HRT).
The two most common difficulties of menopause are hot flashes and vaginal changes, with hot flashes being the most frequent reason why women seek medical attention during menopause. Before leaping into HRT for short-term symptoms, Weber suggests first trying non-medical means. For hot flashes, these could include dressing in layers of natural fibres, sipping cool drinks and using a fan. Avoid alcohol, smoking, hot beverages and highly spiced food. Vitamin E, evening primrose oil, wild yam cream, motherwort and ginseng may assist.
If intercourse is painful from thinner, less elastic vaginal walls and dryness, Weber suggests regular sexual stimulation, with or without a partner, and a water soluble vaginal lubricant. Kegel exercises should also help. These physical changes may bring emotional implications. Combined with Masuda’s “disability castration syndrome” and our culture’s attitude towards women and aging, menopause can mean women with disabilities struggle with their sexuality.
“As long as we think sexuality is just for the young and the beautiful and the fertile and the frisky, we’re going to be in trouble, whether we’re disabled or not,” asserts Weber.
Other problems with menopause may include joint and muscle pain, bladder incontinence, fatigue, loss of energy, heart palpitations, tingling of the skin, numbness of hands and feet, weight gain, headaches, loss of memory and feeling generally unwell. So, it’s clear to see how women with diverse disabilities could easily confuse dual symptoms.
Women also need to be aware of long-term health issues following menopause, including risk of osteoporosis and cardiovascular disease.
Again, before deciding on hormone replacement therapy to prevent either of these, Weber suggests you do a risk assessment. Some factors in osteoporosis are: thin and small-boned build; Caucasian or Asian ethnicity; maternal family history; kidney disease; use of corticosteroids; smoking; lack of exercise; low-calcium diet; and low vitamin-D intake. A bone densitometry can measure bone density and give some more indication of risk of developing osteoporosis.
Weight-bearing exercise like walking or cycling is important for preventing osteoporosis. Clearly, this is a significant problem for many women with mobility disabilities. Unfortunately, both Weber and the Osteoporosis Society of Canada are unaware of any literature on this. But Weber mentions that even sitting places weight pressure on the spine, which may reduce risk of lumbar fractures. In addition, female wheelchair users may be less prone to falls and therefore less prone to fractures from osteoporosis.
Boning up on calcium (1000 to 1500 mg per day) is critical to preventing osteoporosis. Calcium is found in dairy products and some veggies and fruits, including broccoli, sweet potatoes, turnip greens, baked beans, tofu and oranges.
Masuda is concerned that because many women with disabilities are on very low incomes, getting adequate calcium is difficult. Weber suggests skim milk powder as an economical source of calcium. And herbalist Daria Nedilski says the cheapest source of calcium is pesky dandelion leaves popping up in yards. You can simply pick them and safely eat them. But first, make sure they haven’t been sprayed with insecticides!
Weber suggests a similar assessment for cardiovascular risk. Risk factors including early death (before age 40) from heart disease in immediate family, smoking, diabetes, high-cholesterol diet, excess weight, low physical activity, and stress. Many of these can be immediately addressed through lifestyle changes.
Weber thinks all factors need to be seriously weighed before a woman decides to take HRT. If a woman is having difficulty with temporary menopause symptoms and non-medical approaches aren’t helping, HRT for a short time (no more than five years) may be appropriate.
HRT helps to reduce risk of osteoporosis and cardiovascular disease. But it may create an increased risk of breast cancer with long-term use. Weber stresses the importance of each woman doing her own pro/con analysis.
Weber finds “most women on HRT have no idea why they’re on it. The doctor writes a prescription, so they take it. You need to understand why you’re taking it so you have some control…
The other issue about HRT is how does a woman feel about it. Some women are turned off taking medication for a very normal part of life… it’s the only case where healthy women are being given potentially dangerous drugs as prevention.”
While some women think natural remedies are the only way to go, Nedilski cautions that “it’s always best to be guided rather than to try to treat yourself. You don’t want to start playing around with remedies that may not be beneficial or may interfere with medication you’re taking. You need to be careful, especially if you have a chronic illness.”
She says Mother Nature offers many herbs like nettles, horsetail, seaweed and motherwort, which can help with menopause. But Nedilski emphasizes there is no one solution for everyone.
“Listen to your body… listen to your experiences,” she advises with a smile.
Taking time to sit down and have a good long chat with your body to find out what it has to say after living with you all these years may be your best bet for entering this new phase of your life with zest and enthusiasm.
“You are your own expert,” affirms Nedilski.
(This article is not intended to substitute for medical advice or clinical research, but rather to encourage it. Lynne Swanson is a freelance writer living in London, Ontario.)
“The Pause: Positive Approaches to Menopause,” by Lonnie Garfield Barbach (Dutton, 1993)
“Understanding Menopause,” by Janine O’Leary Cobb (Key Porter, 1993)
“The Noisy Passage: Baby Boomers Do Menopause,” by Marie Evans and Ann Shakeshaft (Hysteria Press, 1996)
“150 Most Asked Questions About Menopause: What Women Really Want to Know,” by Ruth S. Jacobowitz (Hearst Books, 1993)
“Dr. Susan Love’s Hormone Book: Making Informed Choices about Menopause,” by Susan Love and Karen Lindsey (Random House, 1997)
“I’m Too Young to Get Old: Health Care for Women After Forty,” by Judith Reichman (Times Books, 1996)
“Is It Hot in Here or Is It Me? A Personal Look at the Facts, Fallacies and Feelings of Menopause,” by Gayle Sand (Harper-Collins, 1993)