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Can the monster shrink?

Jo Johnson, consultant neuropsychologist

Open Door - August 2008 pages 12-13

a monster

What is the monster?

'Shrinking the monster' is a technique I have been developing over the last year. The idea focuses on trying to imagine MS as something separate to you. Of course, we all know that this is not true. MS is a neurological disease and for those of you that have a diagnosis, the disease can be managed but not eliminated. The key message of 'shrinking the monster' is that although you can't change your diagnosis you can shrink this monster's impact on your everyday life.

Where did the monster come from?

As a neuropsychologist, I have often been asked to give talks on the emotional, psychological, cognitive and behavioural symptoms associated with MS. Last summer I was asked to do my usual talk to a group of relatively young women who have MS and meet each month for peer support. I had planned to present an updated version of a talk I had done many times, which was essentially a summary of the relevant evidence based literature. I was unable to sleep the night before the presentation and began instead to reflect on how dry and perhaps overly academic I found it listening to myself think about presenting the usual themes.

I found myself thinking about the many medical conferences I have been to over the years in an effort to think of a more interesting topic to present to this group. I began to consider how often speakers make MS sound like something that has little to do with human beings. Often presentations talk of MS causing lesions, changing gait and decreasing memory. I began in my semi-conscious state to wonder what MS would look like if it was a separate creature, external to people. Would it be a monster or an animal or just a horrid person? As my sleeplessness continued I got up and wrote a presentation called 'the MS Creature.'

another monster

How did the monster grow?

The talk went well and in response to the group's positive feedback I discussed the theme with various colleagues in mental health. I began to explore ideas suggested by psychology colleagues and referred to in the literature as Narrative Therapy. These ideas suggest that both children and adults frequently find it helpful to externalise all kinds of physical and mental health problems. It seems that for some people this externalisation makes them feel more in control and less blamed for their difficulties whether it is incontinence or depression. Winston Churchill was ahead of his time when he referred to his depression as 'the black dog'.

I decided to try and develop this idea of seeing MS as an external force that could be visualised in any way that made sense to the individual. I further developed these ideas in a talk to a group of people newly diagnosed with MS and their partners. The response was very positive, particularly in comparison to all the sensible ideas I have presented in the past!

Individuals started to telephone and email me to tell me about their personal monster, what it looked like and what it was called. Several people found it helpful in a family context as their children could understand the concept and when the MS creature stopped Mum going to the Christmas play it was the creature's fault and not hers.

I went on to develop the presentation using a variety of approaches from the psychological literature like cognitive behaviour therapy, mindfulness and systemic models. I included a 'revenge plan' as part of the presentation, an approach people might use to decrease the impact of the disease on their everyday functioning.

How might the monster help?

Firstly consideration is given to the question, 'What is your monster like?' Some ideas people have shared with me include 'an ex husband', 'an unreliable car', 'a misshapen blob', 'an annoying friend' and 'a spiteful bully'.

I then describe the personality traits of these monsters - unpredictable, invisible, personal and controlling. On the basis of my experience of listening to people with MS, I talk about what the creatures do and how they make people think and feel and how these monsters are set on defeating the people with whom they share their lives.

The good news is that a revenge plan is then presented and provides strategies for getting to know these creatures and thus finding ways to lessen their power, thereby shrinking the monster.

The presentation finishes with some examples of revenge plans and encourages people to feel empowered to make small changes in their life which will make them feel more in control and less of a victim at the hands of an MS creature.

a third monster - grrrrrrr!

My experience so far has been surprisingly positive and many people have gone away to develop the ideas in a way that works for them. One woman told me that she, her husband and children drew the monster as a family and it is now displayed in the kitchen to remind them all to keep on track with the revenge plan. Someone else devised a thermometer to reflect how powerful the monster was on that particular day so other people could understand if she was not coping so well.

Just a few people have found it really difficult to relate to these ideas, so don't worry if you are reading this article thinking 'I don't get how this might help me at all'. It is a difficult thing to do and you might need help to feel you have the power to shrink your own MS monster. Or at the very least, you might take some hope away that there are practical strategies that I discuss that might just make a difference to your life, without you needing to acknowledge a monster!

What's next for the monster?

Several people have asked over the past year if I would be able to develop a workbook to support the presentation and remind people to follow some of the ideas when they got home. I am pleased to say that a workbook is now available and a sample of people have taken them home so I am looking forward to their feedback.

The monster's key message

Shrinking the monster is an attempt to empower people who have MS and their families to make small and realistic changes that can make life with MS feel just a little bit more manageable.

Shrinking the Monster was published by the MS Society in August 2009