Endometriosis and psychology
by Vicki O'Donnell, psychologist and trustee of the National Endometriosis Society, UK
Illustrations by Jane Berstein

Psychology is the study of mind and behaviour. These two are closely linked, because what we think, feel and believe influences how we behave. Within the traditional “biomedical” approach to health and illness, psychology had a very small role to play. This approach viewed mind and body as independent. Physical illness may have had psychological consequences, but a person’s psychological state was not considered to be related to the progression of illness. Treatments were therefore aimed at bringing about physical changes.

The current view, though, is that it is possible to have an interaction between mind and body in which the mental can affect the physical, and so psychology has begun to be included in an understanding of health. Based on what we already know from psychology, we can make some guesses about its role in endometriosis.

Endometriosis is associated with chronic pain, and there is a wealth of research into the psychology of pain. It is generally accepted that psychology influences how we perceive pain, in that psychological factors, not just physical ones, can influence the amount of pain we feel.

Endometriosis can have an effect on fertility. Infertility has psychological effects in terms of anxiety and stress, depression and self-esteem. Many women with endometriosis must cope with infertility as well as the disease itself.

We know that impotence can affect feelings of masculinity and sexual identity for men (Gannon et al, 2004). Because endo can cause pain on intercourse, women with the disease may have to cope with lack of sex or sexual pleasure. This may have significant effects on women’s feelings of sexuality and femininity.

So, as well as all of the aspects of psychology which are involved in any illness, endometriosis presents a unique set of possible psychological issues to be taken into account in our understanding of the disease. We should begin, though, by exploring a bit of what we already know of the psychology of health and illness.

Health Psychology suggests that we should think about human beings as complex systems, and that health and illness should not be viewed as having a single causal factor (Ogden, 2000). Within Health Psychology, individuals are not viewed as passive victims of illness, but as participants in illness. Therefore, the whole person should be treated, not just the physical.

Within Health Psychology, health and illness exist on a continuum. At any given time we can place ourselves somewhere on that continuum. People progress from healthiness towards illness and back again. This is relevant to endometriosis because its cyclical nature means that we can move from being very ill, to potentially being quite well, on a monthly basis. In other diseases, the cycles of health and illness are often spread over longer periods. Health Psychology emphasises an understanding of our subjective experience of illness. Understanding the role that psychological factors play in our illness could help us to alleviate psychological symptoms which themselves exacerbate our physical symptoms.

If we ask different people “What does it mean to be ill?”, we discover great differences in their answers (eg. Lau, 1995). Each of us defines health and illness differently. These definitions stem from a set of underlying beliefs that each of us hold, and which give us a framework for understanding and coping with illness.

One set of beliefs that people have about illness relate to identity – its name and its symptoms. Some people might have difficulty in understanding that someone is ill, when there is no recognised name for their symptoms. With endometriosis, women often tolerate years of symptoms and misdiagnosis before finally discovering what is wrong with them. During that time we often encounter people who are unsympathetic to our situation because we do not yet have a name for it. In fact, we often encounter the same lack of sympathy even after diagnosis because the majority of people have never heard of endometriosis.

There is no right or wrong set of beliefs to have, and everyone is different. But it’s important to try and recognise what our own beliefs are. We should question whether those beliefs are valid or not, whether or not they are actually helping us to deal with our illness, because they do affect our behaviour.

Ill with a virus Waiting for period to begin The storm hit Day 1-2 of period Second day of period Third day of period Fourth day of period Fourth day of period "drugged up"

ILLNESS BELIEFS AND COPING If you have endometriosis, do you see yourself as being “ill”? Or do you only see yourself as “ill” during those times when you are actually symptomatic? People who are permanently symptomatic may view themselves as permanently “ill”. Others may alter their illness beliefs over time, such that having endometriosis becomes a part of who they are, and is no longer an issue of health or illness. Illness beliefs are important because they can have an effect on coping strategies. Although we do not know much about how illness beliefs affect coping in women with endo, we do know something about what happens with people suffering from other illnesses. One study of people with chronic fatigue syndrome (CFS) (Moss-Morris et al, 1996), found that those with a strong illness identity, who strongly identified themselves with the core symptoms of CFS, used coping strategies such as venting emotions, using alcohol as a distracter and engaging in wishful thinking. These people had lower levels of psychological adjustment overall. The people with CFS who believed that there were things they could do to help themselves, or to deal with their symptoms, used coping strategies like planning, active coping and positive reinterpretation (trying to look at your illness in a positive light). They tended to be the ones who sought emotional support for their illness, did not to resort to alcohol, and were better adjusted psychologically. THE IMPORTANCE OF POSITVE REINTEPRETATION The work of one woman with endometriosis illustrates the notion of positive reinterpretation, and shows how it is possible to turn the negative experience of endometriosis, into something more positive. Jane Berstein is an artist, who spent years in pain with endo before being diagnosed, and, in the years before diagnosis, her art was very important to her in coping with her symptoms. She says: “The importance of documenting my symptoms (ie the pain) through my artwork was so necessary for me – knowing that it validated my suffering and knowing that there was something wrong with my body even though the medical doctors missed the diagnosis….I needed to document, to have proof that I actually went through this horrendous pain. The documentation for validation of my symptoms, specifically the pain, were in my drawings.” (Berstein, 1995, p56) This demonstrates the difficulties of dealing with the lack of a “name” for an illness. But more importantly, it illustrates how one woman has turned her illness into something positive, by using it as inspiration for her art, and in doing so, has found a way of coping better with it. It is clear that for Jane, being able to document her experience through art has been beneficial in her overall experience of endometriosis, allowing for a positive reinterpretation of her illness. COULD SUPPORT GROUP MEMBERSHIP BE POSITIVE REINTERPRETATION FOR SOME WOMEN? Given what we know about strategies for coping with illness, joining a support organisation might be helpful. However, because of the different ways in which individuals cope, this would not appeal to everybody. People who use active coping strategies or positive reinterpretation are likely to seek out information, to take control and become active in managing their illness. People who cope by seeking emotional support are likely to look for ways of meeting others to share experiences and support one another. These sound like the kinds of individuals who might join a support group. If the study with sufferers of CFS is correct, then these are also the kinds of people who are likely to be better adjusted psychologically. Does that mean that members of support groups cope better with endometriosis than women who are not members? If so, then the interesting question to ask is whether we joined a support group because that’s the kind of people we are, and we would always have coped better with our illness than other women who are not members; or whether joining a support group has actually improved our ability to cope. Hopefully, this article has posed more questions than it has answered, and it might help us to think more clearly about endometriosis as an illness which affects us on many different levels. It should also help us to think about suport groups as organisations which could help us in many different ways. List of world wide support groups

REFERENCES

Berstein J. Art and endometriosis (from an artist’s sketchbook). Art Therapy 1995;12(1):56-61.

Gannon K, Glover L and Abel P. Masculinity, infertility, stigma and media reports. Social Science & Medicine, 2004;59(6):1169.

Lau RR.Cognitive representations of health and illness. In: D Gochman (Ed), Handbook of Health Behaviour Research, Vol. 1. New York: Plenum, 1995.

Moss-Morris R, Petrie KJ and Weinman J. Functioning in chronic fatigue syndrome: do illness perceptions play a regulatory role? British Journal of Health Psychology 1996;1:15-26.

Ogden, J. Health Psychology. Buckingham: Open University Press, 2000.


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