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Blokes talking

Chris Manners

Open Door - May 2009 pages 10-11

Don't tell anyone, but something strange is happening down on the South coast.

No, go ahead and tell everyone, because I think it's quite a good thing that's going on in the sleepy town of Worthing.

A group of blokes are getting together every couple of months and talking. Incredible! It's not about football or cars, music or beer. In the immortal words of Bill Shankly, "It's much more important than that!"

members of the Worthing men's group Members of the Worthing men's group

They're getting together because they all have something in common, something you too may share if this happens to be your wife's magazine that you're reading. They are all husbands or partners of someone with multiple sclerosis. Every two months since 2005 they have been meeting at a cosy hotel to discuss anything and everything to do with MS. I'm one of them and I have been in the group since its beginning.

My wife, Lisa, was diagnosed with MS some 11 years ago. When our son was born 6 years ago we decided to relocate from the suburbs of West London to Worthing, where my in-laws (the free babysitting service) already lived.

Over time, Lisa's condition progressed and we saw the local MS nurse (also named Lisa, just to confuse things) more often. I was amazed at her dedication and enthusiasm, and the seemingly inexhaustible supply of new ideas she brought with her.

On one visit she raised the subject of how partners cope with living with someone who has MS. She asked how I would feel about meeting other partners in a similar situation, and did I feel it could be beneficial. I agreed that sharing problems can help and volunteered to come along to the first meeting.

I'm sure I don't need to say this, but living with someone with MS can at times be an exhausting, demoralising slog with a 'Groundhog Day'-like repetition. Whilst it can seem like a never-ending series of treatments, consultations and support for Lisa, there can seem little in the way of support or counselling for the 'other half'. It's easy to feel somewhat isolated, ignored and forgotten.

I turned up on the evening of the first meeting and found Lisa Black (our MS nurse) along with Jo Johnson (a neurophsychologist whom we've met before) and a group of slightly bemused looking blokes. Brief introductions were made and we were all made to feel welcome. Lisa and Jo chatted to us about what had led them to come up with the idea of the partners' group and what they thought we could get out of it. They shared a feeling that there was a need for informal gatherings for local MS partners where support and advice could be provided in a relaxed environment. Some funding had been secured, which resulted in a very tasty buffet being provided (further incentive to come along, if any were needed!)

As the evening progressed, the conversation ranged over our various situations and how we cope with them. Everyone contributed something to the discussion, with much common ground being shared. Sometimes I got the feeling that things were being said openly for the first time in a group. This certainly takes courage, but the atmosphere was very supportive and encouraging. Although the subject may be serious, some of the discussion was definitely light-hearted. Humour can be a great help in difficult times and there has been much laughter at the meetings.

Jo and Lisa encouraged us to talk (not a natural thing for a bloke!) and suggested strategies for coping with various problems. New drugs and treatments were mentioned, along with their possible benefits and drawbacks. A wide range of literature was also provided on many aspects of MS.

At the end of the evening, our 'hosts' asked what we thought of the idea, and would we think another such gathering would be a good idea. The feedback was very positive and a programme was drawn up of meetings every two months.

The gatherings have been taking place for a few years now, and my personal opinion is that they have been a great source of information and encouragement. (And fun too - our 'hosts' would make a great comedy double-act if they ever decided to give up their day jobs!).

The format of the evenings tends to alternate between two approaches. On more formal information evenings an invited speaker will talk on their specialist area. This could be topics such as claiming benefits, managing fatigue or the latest research into treatments for MS. Rehabilitation consultant Dr Margaret Rice-Oxley has visited us twice to give excellent talks which make this mystifying disease slightly more understandable.

The other evenings tend to be more of a general chat within the group, but with input from Jo and Lisa on new research and treatments. These can be just as informative, as everyone seems to have some piece of knowledge which can make a great difference to others in the group: things like the best airlines for transporting wheelchairs, advice on DLA-friendly local garages, discounts at local cinemas and places to eat which have good wheelchair access. At every meeting I seem to find out about another benefit or type of financial assistance that I'd never heard of before.

Some topics can obviously be more difficult to talk about in a group situation: subjects like depression, sex and incontinence have all been covered at some point. No-one is under any pressure to talk if they don't want to, but it feels like everyone contributes something to the conversation.

I know that just talking about things won't find a cure for MS, but if it gives us some sense of reassurance then maybe that's something positive we can take home to our partners to help us all deal with life's ups and downs. We may be discussing a serious subject, but we're also having a bit of fun at the same time. Surely that's got to help in some way? Talking about our situations has, I feel, created a bond between us of shared experiences, which has made me feel less alone; less isolated and perhaps a bit better at managing crises when they come our way.

Jo Johnson has often called MS a monster, and labelled the process of developing techniques for coping with MS as 'shrinking the monster'. By getting together and talking about it, and laughing at it, I feel in some way we are 'ganging up on it' and hopefully making it a smaller and slightly less horrible monster.

I'd like to finish by saying that these are my own personal thoughts on the experience of being a member of the 'Men's group'. Other members may have a completely different impression. I can't claim it's a full and honest record of everything we've done, but it's the bits that have stuck in my memory. Overall, I think the group is a great source of information and encouragement, and I would recommend anyone who is considering setting up such a group elsewhere to give it a go. Despite the stereotypes, sometimes blokes will talk to each other about important stuff. Like football, cars, music, beer...

Lisa and Jo were both online during the recent chat session for partners. Read, order or download the transcript
Jo Johnson's Open Door article Can the monster shrink?

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