Christine
Christine’s friend was diagnosed with MS sometime before telling her about it. They have maintained a close relationship, while living apart, though they have both struggled to come to terms with the disabilities that the illness brings.
Christine, age 50, works as a medical secretary. She is Caribbean British, single, with no children.
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Christine’s friend was diagnosed with MS in the year she met him 2005, but didn’t tell her about it until 2009. She suspected that something was wrong because she observed his difficulties with moving around. He told her over dinner one night that this was due to MS. Hearing this was a shock to Christine, knowing how much MS had affected other friends, and considering what it might mean for this closer relationship.
Christine’s initial reaction was to try and contain her feelings, despite being stunned and dazed at the news, and to think about what she would need to do to help him, in the immediate and longer term future. They talked together about the practicalities of anticipating and managing likely problems and difficulties, tending to avoid focusing on the emotional impact of the diagnosis on them both.
Dealing with the first year was very hard. Christine observed that with the onset and progress of MS, her friend found it hard to come to terms with being less able. She, too, felt a struggle in coming to terms with the fact that her boyfriend was disabled. His confrontational and argumentative behaviour, towards her and others, led to conflict and to Christine becoming upset on occasions, to the extent that her friends encouraged her to break up with him. She considered this carefully over a two month period but decided to stay in the relationship.
When he started to get worse, and to need her help more, her friend asked Christine to think about becoming a live-in carer but they have not been able to agree on this and, at the time of interview, still live apart. They arranged that she would visit every couple of weeks to help with cleaning, shopping and occasional cooking. Occasionally he has asked her to help him with foot massage and a bit of stretching, but doesn’t really want help and encouragement with physiotherapy exercises or with getting information about research and treatment. Christine thinks this is because he wants to deal with MS in his own time and in his own way.
At the time of interview Christine’s friend is in hospital, admitted for treatment of yet another urinary tract infection (3 episodes in 4 weeks). He reports that doctors want to get him to walk again, using a combination of drug treatment and physiotherapy. Christine thinks is good news because it appears that he has been accepting too readily, in her view, that he would be soon confined to a wheelchair. Overall, Christine has a more optimistic outlook for the possibilities of effective self-management and for the range of help available to people with MS.
Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.
Christine asked her friend directly if he ever thought about committing suicide, because he seems to be ‘on the depressive side.’ He said that he ‘wouldn’t want to do that,’ but she is not so sure that he wouldn’t.
Christine says she has never felt alone in dealing with MS because there are many sources of information and help.
Christine says she has never felt alone in dealing with MS because there are many sources of information and help.
Christine noticed that her boyfriend was struggling to run for a bus when they went out for a meal. He told her that he had been diagnosed with MS some time before.
Christine noticed that her boyfriend was struggling to run for a bus when they went out for a meal. He told her that he had been diagnosed with MS some time before.
He says, “No, I’m okay, you know. It’s just that I’ve got, you know, my right leg is playing up. It has been for a few weeks anyway.” And so I said, “Oh, okay.”
Then we he bought me a drink, when we got to the pub, bought me a drink and we sat down and he ordered the food and it turned up and I’d had a few sips of wine and he’d had a few sips of what he had to drink and he said, “I need to talk to you about something.” And I said, “Okay.” And he said, “Did you notice about the way I was moving, did you notice something?” I said, “Yeah, I you seemed to be struggling to be running. I thought.” He said, “Yeah, do you do you have any idea what it could be? Any idea of...” I thought, “Well.” And I thought, and I had this sort of feeling of fear, you know, in which you have a bit of a tight knot in your stomach thinking, “Oh my goodness. Is it, what kind of, what’s he going to tell me? What’s up with him? What’s wrong?” Because you always have that knotting fear in your stomach when somebody is about to tell you news which is going to be of great importance to them and affects you as well. And I was trying to sort of get past this knot and I thought, I was aware that I’d stopped eating what I, I remember eating, I remember what I was eating, a very good lamb shank, which seemed to sort of lose its taste and I remember sort of holding my knife and fork, you know, poised as if like, what are you going to tell me? I think I actually said that, “What are you going to tell me?” I said, “Have you, what what’s up? What’s the matter? Have you got motor neurone disease?” He said, “That’s very good. It’s quite close. I’ve got Multiple Sclerosis.”
Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.
Christine accepts that the sexual part of their relationship is probably over, but she appreciates that her boyfriend misses it.
He’s at that stage now where he physically just getting around from the bedroom to the kitchen, making a meal and then sort of getting to the computer maybe, to do a bit of work and getting up to answer the door, is just going to wear him out. So he’s more easily tired and I’ve just sort of come to terms with it, you know. I just sort of sit beside him on the sofa, hold his hand and then I’ll sort of get up and say, “Okay, well, let me sort of put the kettle on for a cup of tea and let me sort of cook the meal, you know, because I know you’re too tired to do it and just sort of lay there for a moment, just lay there or go to bed or sleep, whatever you need to do. I’ll just sort of sit and make you comfortable.”
So those times when before we’d would be more affectionate with each other, I just make him comfortable and I’m quite happy to do that. The fact that he’s still being able to talk to me I think is much more important than anything of a physical nature, much more important but I appreciate that that he just sort of misses that and mentions it so I’ll just sort of just play along but I’ll just sort of say, “Okay. That’s fine but, you know, you do all the flirting, make all the jokes you want.” But it, you know, it’s going to be less of an issue, okay. Just let’s sort of just sort of maybe sort of deal with that, you know, tomorrow or whatever it is.” But rather than sort of say, you know, “It’s finished. It’s the end,” which I don’t think is the right kind of thing to say, I’ll say, “Okay, well, you know, maybe in a few months. Maybe next week or whatever it is.” Maybe, you know, maybe things might change but I don’t think that they will really in terms of, you know, the sex part of the relationship. I think that that’s over. But that’s okay.