Feature

Listen without prejudice

Women with chronic illnesses see doctors more often than most of us — which makes them ideal observers of medical attitudes to women, says Veronica Marris

Much has been written about women and doctors, particularly in relation to reproductive health, gynaecology and surgery. But there has been little focus on a body of women who have a close and lasting relationship with the medical profession because they have a long-term illness. An episode of acute illness may be quite minor or may change our lives completely, but usually, with luck we recover and our experiences of hospital, doctors and treatment will fade into the background as we return to normal life. Women who have conditions such as arthritis, epilepsy, sickle cell anaemia, multiple sclerosis or myalgic encephalitis (ME) will live through years of check-ups, tests and treatment. Our positive and negative experiences of health care are repeated and reinforced over and over again and become part of the everyday fabric of our lives. We are in an ideal position to observe and comment on the best and the worst of health care.

When I was diagnosed with insulin-dependent diabetes I was told by several professionals that ‘very soon you’ll know more about your diabetes than we do’, a phrase which seemed to indicate some kind of partnership between myself and them, and a recognition of my role in my own care. Over the years since then I have spoken to numerous other women with diabetes and more recently interviewed women with a variety of other chronic medical conditions, who have talked about what their health care is like and how they would like it to be. A partnership with our medical carers is precisely what we want, but more often than not it isn’t what we get. We may be treated as if we know nothing, be spoken to as if we are children and even threatened with punishment if we do not do as we are told.

‘I’ve got to find some way to take responsibility for my health myself, but it is difficult after close contact with the health service, because it is so disempowering and undermining. They are dismissive of any alternative treatment and they scare you about it.’ (Grace, a woman with rheumatoid arthritis)

Living with a chronic illness means becoming acutely, often tediously aware of one’s own body and its changes and demands. While I would not claim to have become an expert in diabetes over the past nine years, I do claim expert knowledge of how my own body works and the part that diabetes plays. This is a completely different, though potentially complementary, kind of knowledge to that of a consultant or nurse specialising in diabetes. The latter have information based on research and on the experience of many different patients, but they do not have the day-to-day detail which comes from living with the illness itself:

‘Doctors are not involved in day-to-day decisions. You do that yourself. It’s just trial and error and you know when you’ve made a mistake.’ (Sade, a woman with lupus)

‘My biggest urge is, please, doctors and nurses, listen to us. Just as a mother knows, nine times out of ten, if there’s something wrong with her child, so people with disabilities know when they’re suffering and know what helps it. (Janet)

Sometimes the problem, as in Janet’s case, is having a rare or unusual condition. Janet has Ehlers-Danlos syndrome, a connective tissue disorder about which relatively little is known, so it is not unusual for her to find herself in a situation where she genuinely does know more about the condition than the doctors treating her. This runs contrary to the normal expectations of both doctor and patient and can be frightening for both. Women who live with HIV also have to confront both ignorance and fear:

‘My worry is that if I become ill and have to go into hospital, I may end up in one where they don’t have specialist wards. I don’t want to end up in any old ward, tagged in a corner. There’s still a huge amount of ignorance among health staff around HIV.’ (Anna)

A further problem faced by some is that very little seems to be known about how women’s different biology interacts with their particular illness. If an illness is common to both men and women (for instance as in the case of diabetes, asthma or multiple sclerosis) it tends to be assumed that women’s bodies will behave in the same way as men’s, except in relation to pregnancy and sometimes the menopause. The ordinary, everyday menstrual cycle seems to be completely ignored.

‘The menstrual cycle causes diabetics horrendous problems, but consultants don’t seem to get very excited about it, perhaps because most of them are men. (Helen)

Women with sickle cell anaemia may find that lack of knowledge of the condition is combined with assumptions about black people, although Paris, who lives with this disease, says that things have improved in recent years.

‘They are more informed than they used to be. Before, if one of us went into hospital asking for something for the pain, people would look at you as if you were a junkie. Now they know that it’s genuine pain.’

Medical attitudes to working class women, older women or those who are perceived to be overweight may also get in the way of prompt and accurate diagnosis and treatment.

‘I’m hoping to lose some weight (before going to the doctor). If you go with a grouch and you’re slim they’re much more likely to take notice of you than if you’re fat—even if you go with a toothache.’ (Patricia, who has fibromyalgia, a rheumatic disease)

‘My mother was humiliated so many times at the doctor’s because of her weight that she didn’t feel she could go to them. I feel really sad that she and other female relatives of mine spent so much of their lives feeling ill, when underactive thyroid is a condition which has been known about and for which there’s been a treatment for a long time. They were just poor women in an area without good doctors, so nobody found out.’ (Maggie)

Maggie’s GP wanted to treat her for postnatal depression when she was exhausted and ill after the birth of her first baby and it was only when she mentioned her mother’s thyroid problem that he gave her the blood test which showed that her thyroid was also seriously under-active. This denial and disbelief of their experience is perhaps the greatest hurdle faced by many women I have spoken to. Lupus is an illness which does not have a high profile in the UK, and which has a very wide range of symptoms, making it sometimes hard to diagnose. Some women with lupus or with ME, a relatively new disease, have had particular difficulty in being diagnosed and have been treated as hypochondriac or as suffering from depression or other mental illness.

There are also women who have experienced dismissal or misdiagnosis despite having clear cut symptoms, and in these cases we can clearly see the harm done by doctors’ assumptions about their women patients. Women are often seen as neurotic, attention seeking or likely to imagine things. For example, Lesley went to her GP several times with vaginal bleeding and severe pain, but he refused to examine her internally, put her on the Pill to control the bleeding and called her a silly woman. It was only when her parents took her to a private gynaecologist that she was found to have a large tumour in her cervix.

Maggie’s word was doubted because she had just had a baby and Lesley’s possibly because her GP knew she had some problems in her relationship. Adele was born with spina bifida and other inherited conditions, but they were not diagnosed until she was well into her 20s. Her history of being abused as a child meant that all GPs she went to assumed her complaints of pain were psychosomatic.

There are some bright spots on the horizon, however. Many women do perceive positive changes in attitude on the part of health professionals. Marlene, who has rheumatoid arthritis, says: ‘They feel they have to explain things to you and they can’t act like God anymore.’ Others welcome the fact that that doctors listen a bit more and that there are opportunities to talk things through with someone other than the doctor (such as the practice nurse or a specialist) when appropriate.

‘I’m very fortunate that my GP cares about my quality of life. I’m on a pain-relieving drug which is addictive, but he trusts me to cut it down and increase it myself. I think trust is very important.’ (Janet)

‘The surgeon was wonderful. I asked loads and loads of questions. He never stopped answering my questions or made me feel silly for asking them.’ (Lesley)

Health care purchasers and providers talk a great deal these days about ‘partnership’ and ‘listening to users’. They could do with listening to women with chronic illnesses saying what they value most in their health care, telling us something about what partnership and listening really mean.

All quotes are taken from Lives worth living: women’s experience of chronic illness by Veronica Marris and published by Pandora in June 1996.