"Gather jewels from the week"
Open Door - November 2003 pages 8-9
Women talk about their positive strategies for living with multiple sclerosis
Frances Reynolds and Sarah Prior, Department of Health & Social Care, Brunel University
Introduction
In 2001, we began a series of interviews that explored the strategies that women devise for maintaining their quality of life with MS. We chose to focus on women's experiences as more women are affected by MS, and it is possible that men and women have different approaches to managing this condition.
Who participated in the study?
A local MS Therapy Centre agreed to help us find some participants, and others joined the study through word of mouth or through other contacts. Ultimately, 27 women agreed to be interviewed, some at the therapy centre, and some in their own homes. Their ages ranged from 32 to 75 years, with most in their 40s or 50s. Most had lived with the illness for many years. The majority had relapsing/remitting MS.
The interview began with a broad question inviting the participant to describe herself in whatever way she chose. The interview then explored the effects that MS was having on her life, the strategies she had developed for maintaining health and managing the illness, the experiences, roles and activities that contributed most to quality of life, and future plans.
Exploring quality of life in MS
A brief report about our findings inevitably needs to focus on the strategies and experiences that were most frequently discussed during the interviews, but we acknowledge that living with MS is a unique challenge for each affected individual. It is also clear that MS creates many difficulties and losses in people's lives. Not surprisingly, none of the participants presented their quality of life in wholly positive terms.
Participants reported using a wide variety of active strategies for managing the impact of illness on their lives, and acknowledged that life was a complex tapestry of positive and negative elements. Many distinguished between strategies that managed the specific symptoms of MS, and strategies that addressed other quality of life issues. Almost all of the women coped with their illness symptoms through a variety of health promotion strategies, including educating themselves about MS, physiotherapy, yoga, swimming, oxygen therapy, and looking after their diet. Most argued that if they could maximise their health and fitness, then the symptoms of MS might be better controlled. Yet most participants emphasised that a quality life involved much more than 'coping with MS', or dealing with the symptoms of illness - as the list below shows.
Attitudes and strategies for achieving a quality life with MS - the most frequently occurring themes
Managing illness and limiting its impact on daily activities
- Looking after one's health
- Pacing and fatigue management
- Managing stress well
- Adopting the 'fighting spirit'
Preserving some continuity of self-image whilst engaging in personal growth
- Maintaining the most meaningful occupations and roles
- Adapting pre-illness skills/interests to current levels of physical functioning
- Resisting prejudice and the disabling barriers imposed by society
- Developing new sources of life satisfaction - finding new interests, roles, goals
Consciously valuing and promoting the positive aspects of life
- Valuing positive moments
- Making constructive use of precious time and energy
- Finding positive aspects in adversity
- Enjoying fun and humour
- Focusing on fulfilling personal needs, aspirations and abilities as far as possible, within the context of illness
- Comparing self with less fortunate others
Clarifying values and meanings
- Reflecting on religious/ philosophical beliefs
- Making personal sense of illness
Maintaining mutual relationships
- Accepting social support
- Appreciating the company of friends
- Prioritising one's family's needs
- Helping others
As the list shows, participants considered that certain roles and favourite activities were vital for sustaining their self-image. Those who were mothers were adamant about retaining their caring role in the family:
"I think the important thing is that I feel able still to be a mother, a wife and also part of the outside world as well. I feel as though I can still contribute which is very important I think."
As well as offering emotional support to partners and children, some endeavoured to prevent their lives from being circumscribed by illness:
"I want the children to see that you can still have fun and because you are bad one day doesn't mean that you always have to be looking out for it and worrying about it the next."
Many were conscious of taking up as many opportunities as they could for personal growth, and making a contribution to others. Many were also aware of making deliberate choices to enhance their satisfaction with life:
"You have this choice where you could enter into a total vegetable depressed giving-up mode. Or, there is a point where I have got to when I start thinking maybe I will just practise drawing today. ...Maybe it is time to start living again?"
The 'fighting spirit' was seen as an important way of dealing not only with the challenges of illness but also other life adversities, such as divorce and difficult teenagers:
"So I've been through a really horrible divorce and now I think I've got to the point where I'm comfortable with my house, my dog and my cat. I've decided that having a partner isn't the be-all and end-all of life."
Over time, some women had come to view adaptability as a positive choice rather than an enforced necessity. This encouraged some women to take up new creative occupations once retired from work, or to revive interests that had been mainly kept on hold during their working lives, such as painting or researching the family tree. This strategy seemed to help them to interpret their illness as having some positive aspects:
"Getting MS was a real catalyst. When I look back and see how my life was going, I was forty-five and my children were leaving home. In a job, which I did enjoy, but it was sort of seven days a week and I had time for nothing else. MS has enabled me to open up my life in so many different directions."
Consciously valuing positive experiences formed another widespread strategy of enhancing satisfaction with life. Many participants deliberately reflected upon the better aspects of their lives to maintain their morale. For example, one young mother who had recently fulfilled a life-long ambition to ride a horse recounted some of the positive aspects of her life:
"I have been privileged that I can see my kids grow up and be with them. At the moment I am not in hospital. So I try and focus on the moments when it is OK. And I gather jewels from the week. The horse riding - if ever I have a painful time I'll focus on the feelings I had when I was riding the horse."
Many participants reflected on how they had shifted their attention on to their capabilities rather than limitations:
"I just get on with it, really. I try not to make MS the focus of my life. I'm a person with it, if you know what I mean, I've just got to get on with it."
Conclusion:
The interviews suggested that living positively with a chronic condition such as MS required more than strategies to cope with the physical symptoms of illness. Many acknowledged that they had experienced a struggle to climb out of depression in the early years of MS and to regain a sense of purpose. Yet over time, many had devised a wide range of positive strategies that enhanced quality of life, including reappraising values, and appreciating life's positive moments. Many of the women expressed their determination to retain active roles and meaningful occupations, and to engage in personal growth. They retained a number of positive aspirations for their lives and seemed to be engaged in much more than illness management strategies.
Acknowledgements: The authors would like to thank the women who participated in the study, and Brunel University for its financial support.
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