MS and identity

Exploring the impact of MS on a person's psychological wellbeing

Dr Louise Woods, Clinical Psychologist, Manchester Mental Health & Social Care Trust
Dr Julia Boot, Clinical Psychologist, Cheshire & Wirral Partnership NHS Foundation Trust
Dr Jane Simpson, Research Director, Lancaster University

Way Ahead 2010;14(3):6-7

Introduction

Research suggests that physical changes to the body, particularly those that cause long-term problems with functioning, can affect how a person thinks and feels about themselves¹. Furthermore, bodily changes may also alter how other people perceive and interact with a person² which can also have an impact on their mood and self-esteem.

MS is a chronic neurological condition that affects physical functioning by disrupting the transmission of messages within the central nervous system. Symptoms vary depending on the location of central nervous system damage but commonly include: fatigue, cognition problems, mobility problems, bladder and bowel dysfunction and altered sensory perception.

In contrast to a number of other chronic conditions, the typical timing of MS onset means that most people have largely established their identity in the absence of the condition. Adjusting the concept of self to accommodate MS and the changes that it can bring with it can therefore be challenging. Furthermore, this challenge tends to coincide with the stage of adulthood where people work towards important goals such as developing and sustaining romantic relationships, interests, family life and a career.

Existing research has acknowledged the interaction between identity and MS but there appears to have been no in-depth explorations of the issue. The current study aimed to address this gap by researching how the identity of twelve people had been altered by having MS.

Method

In-depth interviews were conducted with 12 people with different types of MS and different symptoms: 8 women and 4 men with ages ranging between 34 and 71 years. All had a diagnosis of MS, though the majority were in the secondary progressive stage. The duration of symptoms ranged from 6 and 28 years, though in some cases symptoms were experienced many years before a diagnosis was made.

Participants reported problems with pins and needles, sight, use of their limbs, bladder control, slowed thinking, fatigue, spasms and neuropathic pain. Their experiences were transcribed and analysed. Three key themes thought to best reflect the data were identified and discussed below.

1. The changing relationship to body; 'My body doesn't belong to me'

This theme described the changing relationship to the body experienced by many participants following the onset of MS. Participants described how their body began to behave in unexpected ways. Bodies no longer seemed familiar or reliable. In some cases, people began to perceive their bodies as something separate or alien to themselves; an enemy that needed to be fought against.

I was in the college trampoline display team, [and] was supposed to end the display but my body didn't belong to me - nothing that you could put your finger on. I just lost my nerve and couldn't do it...the lecturer was annoyed and thought I was being a prima donna
Grace

Many found this experience frightening; for others it left them feeling sad, anxious and uncertain. Most participants found ways to cope - sometimes through humour and often through the support of close friends and family.

2. The changing relationship to identity; 'I miss the way I feel about myself'

Where symptoms interfered with meaningful aspects of identity; mood and self-worth were also often affected. Several participants talked about feeling less confident, whilst others felt depressed or anxious.

...The thing I miss most [is] the way I feel about myself. I'm useless you know...I don't put any input into anything cause there's no input to give...with not being able to walk I can't do the things I want to do, and [I'd] like to do..."
George

What was important varied greatly from person to person. For some, it was the ability to perform practical tasks whereas for others, thinking skills, such as memory and concentration, were valued more highly.

Living with MS, however, did not only affect people in a negative way; for some it also provided a valued opportunity for reflection and personal development. Several people reported a new found self-awareness, a re-evaluation of life or a greater appreciation of relationships and values important to them.

The weird thing is in a bizarre way having MS is one of the best things that's ever happened to me...it's made me look at life completely differently. What used to be important I suddenly see is nothing, it's just materialistic and it's the way I feel about people and people feel about me that's really important
Alex

3. Incorporating yet separating MS from me; 'Let's just try and live with it'

The third theme related to ways people would preserve or enhance their existing sense of identity. Over time, people were able to incorporate MS into their identity, although many commented that this process was an ongoing challenge.

...you can't see it (MS) so you're... get[ting] cross and... really angry at this thing that is wrong ...then you think, hang on, why waste all your energy ...let's just try and live with it.
Charlotte

For the majority of people, a need for separation and distance between identity and MS was identified. Where appropriately positioned, this psychological boundary seemed to help a person cope with their illness without becoming consumed by it entirely. Some examples of strategies used to establish this included:

Adaptation - people made practical adaptations to their daily routines to enable them to continue to do their usual activities but in a slightly altered way - for example - breaking down tasks into smaller steps or using physical aids.
Keeping a degree of mental distance between identity/life and MS - people achieved this by pushing MS out of their awareness. This strategy differed from denial in that MS was still acknowledged and managed.
External factors - people used support from family, friends, partners, paid workers and benefits to help them continue with valued activities and roles such as being a parent and a worker.

Irrespective of how well a person felt they managed their MS, most people experienced feelings of frustration, anger or sadness at times. Many found humour, crying, and talking to others helped. Others described coping by 'keeping going' yet taking 'regular pit stops'.

Clinical recommendations

This study suggests that to support a person with MS to maintain their sense of self, it could help to:

Recognise the importance of meaning

Spend time finding out what matters most to them as a person, for example, what things do they do that they consider key parts of who they are (are they a gardener, a carer, do they like being active with the children or playing sport?)
Identify the symptoms that bother a person most and why, then help them work out how they can maintain or replace activities that fit with their identity. For example, if they can no longer run around with their children or grandchildren, are they able to spend more time reading with them?

Monitor risk factors

If you know what is important to someone, such as being a hairdresser, keep an eye out for symptom changes that may interfere with this, for example - problems with their hands or concentration.
Be aware that individuals who have experienced psychological difficulties in the past may be particularly vulnerable when MS symptoms worsen and could become depressed or anxious.
Identifying emotional problems early on and directing people to available support can prevent them escalating. Provide people with information about what support is available in their area, such as MS groups, counselling or psychological therapy.

Adapt identity in response to MS

Where important aspects of identity have been disrupted, spend time helping a person rebuild a strong and positive sense of who they are. This can be done by using the strategies already outlined.
Altering a person's environment or providing aids (for example in the form of paid help or benefits) may also facilitate this process. If a person's job is important to them and they are struggling to perform it as their office is on the second floor, moving it to the ground floor may be all that's needed to keep that person in employment. Alternatively, if a person is out of work, encouraging them to do some voluntary work that fits with their interests may also be important.

Take home message

The findings from this study suggest that the onset of MS does not automatically bring into question a person's identity. Rather, it is how much the symptoms impact upon their ability to fulfil roles integral to their pre-MS self that have the greatest re-defining impact. Consequently, symptoms that threaten identity are more likely to contribute to emotional problems such as depression.

Clinicians can support people to maintain their identity by identifying which symptoms affect people most and, where possible, helping them to reconnect with previous interests, roles and values - albeit in an adapted fashion.

The need for sensitive assessment of psychological problems and timely access to support, at any point during the disease trajectory, is also highlighted.

Accessing Support

The importance of providing psychological support for individuals living with chronic illnesses is increasingly recognised. In 2005, for example, the Department of Health delivered the National Service Framework for Long-term Conditions within which the need to attend to all aspects of care including a person's psychological, emotional and social health was made explicit³.

Psychological support can be accessed by seeking a referral from any professional involved in a person's care, including MS nurses, doctors and GPs. There may be a psychologist or counsellor attached to a particular MS team; alternatively more general adult mental health services are usually available by direct referral or via their GP.

Voluntary services such as the MS Trust and MS Society may also be contacted for support. Information about services is available on the internet via the MS Trust's map of MS services.

References

Charmaz K.
The body, identity and self; adapting to impairment.
Sociol Quart 1995; 36: 657-680.
Goffman E.
Stigma: notes on the management of spoiled identity.
New Jersey: Prentice-Hall; 1963.
Department of Health.
National service framework for long-term conditions.
London: DH; 2005

With special thanks also to the Countess of Chester MS care team, Dr Mike Boggild, Kerry Mutch and Pam Lewis, for all their help and support.

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