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Coming to terms with MS - a partner's perspective

Lesley Crawford

Open Door - August 2004 pages 8-9

Being a carer to someone with a lifelong illness is a difficult job.

My partner and I had been together for 12 years when he was diagnosed with MS three years ago. For the majority of that time were very happy, although the couple of years before his diagnosis were stressful. With hindsight it is obvious that Willy's health was deteriorating but to me it seemed that he was becoming grumpy and lazy. Our relationship was strained as communication deteriorated between us. Willy was preoccupied with the changes his body was going through and I felt resentful about gradually being shut out from how he was feeling. So when the diagnosis came it was at least a relief to know there was a reason behind his behaviour. However that was the point where we actually had to face up to the fact that life would never be the same again

Previously I thought that the physical disability would be the worst thing to deal with but in my situation it is the psychological changes that have been the hardest. People who care can't say or do anything to offer comfort over the loss of a person's self image. Willy was very athletic before his 30th birthday. He filled his free time skiing, jogging, cycling or paragliding. One of the first appointments we had after diagnosis was with a physiotherapist. Watching him try to catch a ball or walk in a straight line was heartbreaking and trying to make life seem worthwhile for him immediately afterwards was hopeless.

Things have improved since then but it takes a long time to adjust to a new self image that feels alien and corrosive. Our relationship dynamics have changed from two people sharing a life together as responsible adults into two people struggling to survive. Willy has frustrations about losing his independence and confidence while I struggle with guilt about not doing enough and resentment about having to shoulder all the responsibilities.

It is difficult for people to empathise with disabilities that cannot be seen and what I have discovered is that things that may seem minor can have a huge impact on lifestyle. Symptoms like fatigue, which limit the distance Willy can walk, or a tremor that causes him to involuntarily throw food or drink about makes wining and dining in public potentially socially embarrassing. Going on holiday now is more of a chore than a pleasure. Airports are a nightmare with long walks to departure lounges, queues to stand in and luggage to carry. If the climate is too extreme on arrival or amenities are too far away it can feel more like a prison sentence than a vacation. Even a trip to the pub can be marred by the worry of getting home.

When I go to work, Willy is by himself during the day. He sometimes feels dejected by the time I get home so I have more or less stopped socialising because it does not feel right to leave him again and when I do go out I am wondering if he is alright.

Being a carer is not a rewarding task, it is a necessity. Willy has MS and I live with MS. In order to survive there is no choice but to adapt to the limitations as they occur. It is so easy to slide into depression and feel cheated by life. Part of my guilt comes from my lack of motivation. It takes a lot of energy to keep functioning as normal when the boundaries between work and home life are blurred. Spending a lot of time in the house results in a lot of housework needing to be done and a feeling of being overwhelmed can lead to inertia.

I have never been interested in financial matters but I have also had to look into what benefits we are entitled to. This is an arduous task made worse by filling in forms, repeating Willy's symptoms and losing the feeling of self sufficiency that I took for granted before. Whatever we are entitled to is no compensation for loss of self esteem but to have to actively seek help out adds to feelings of inadequacy and helplessness. We are lucky because we have a very supportive family who are able to help us financially and I dread to think how someone would fare depending on the benefit system alone.

I feel as if Willy and I have been through the worst part of MS now - the coming to terms with a major lifestyle change. Our relationship has changed because we have changed but we are in agreement that we will face the future together. Again I think we are lucky because if we had not had a strong relationship before the strains of adapting to life with MS we could have easily separated. We had years of laughing together but it is easy to laugh when you feel in control of your life. Now the laughter is starting to come back as Willy's condition seems stable and in fact has improved since diagnosis. The most important part of being a carer for me is to be there to reassure Willy that he is still a person who is worthwhile despite his physical limitations. A condition like MS is like the sword of Damocles hanging over the person's head, making it easy to forget the person underneath.

A letter we received after the last issue of Open Door reflects on another problem that can be encountered by the partners of people with MS.

My husband presented with MS relatively late in life aged 50. He continued in as full a harness as fatigue and diminishing mobility would allow until his sudden, unexpected death due to an aneurysm at the age of 61.

We had always worked very closely together, for the last six years from home, which was practical and worked well. I was able to give the 24 hour support that my husband latterly needed for work, recreation and self care (including toileting etc). He had a telephone with him at all times for business and emergency purposes.

We had a good relationship with our GP and consultant neurologist, however at no stage did it seem to cross the mind of any professional we talked to that I might wish to talk in confidence about my husband's condition or my ability to cope with an extremely demanding situation. I was very frightened for the future, but could not let my husband see this as he would have been deeply upset himself to know the extent of my perturbation, and his condition being the cause of it. Ours was an exceptionally strong, loving marriage. I suspect that at consultations we reflected this, so all questions were addressed to my husband, and he answered for himself, occasionally with my prompting.

The isolation of my situation, in which I could only leave my husband briefly and could not rely on having even a telephone conversation in private, is a vivid memory, along with very many positive images.

Reading in Open Door about the education programme for health professionals has prompted me to remember the lack of perceptiveness among the professionals we came across a decade ago, and to enquire whether such isolation as mine could go unnoticed today. Please assure me that part of every training programme includes consideration of the impact of MS on the families, and the opportunity for their voice to be heard directly and discretely.

Nicola Russell, Director of Services at the MS Trust replies:
"Within the induction course organised by the MS Trust for MS specialist practitioners and in our other education programmes, we always try to include input direct from people with MS and also to discuss the needs of their family and friends. However, the carer role is a complex one and situations vary. Many health professionals tell us that the pressures of time and location often inhibit their ability to discuss issues such as those raised here. Clearly there is more work to be done to achieve an ideal level of support and information for the whole family affected by MS."

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