Multiple Sclerosis: friends & family experiences
Deciding whether to tell others
When someone is diagnosed with a condition such as Multiple Sclerosis (MS), there are decisions to be made about if and when to let other people, including friends, family members, employers or work colleagues, know about the diagnosis. Some people we talked to told others immediately, before thinking through who they might tell, and how. For others there was a delay as they considered who they might tell and what would be the benefits and drawbacks of telling. Almost all decisions about who to tell, and how, were based on thinking about what people needed to know. Deciding that somebody needed to know was generally the trigger to tell them. Sometimes the person with MS didn’t want anybody to know and friends and family talked about the need to respect their wishes, even if they found this difficult. Commonly, people did not want to be labelled or pitied and wanted to be treated as normal. Stella’s partner, for instance, was keen not to be ‘branded as a sick person’.
Stella told one of her students and a couple of friends about her partner’s diagnosis, before discovering he didn’t want anybody to know. This was hard for Stella. Later, he changed his mind, which made things easier.
Stella told one of her students and a couple of friends about her partner’s diagnosis, before discovering he didn’t want anybody to know. This was hard for Stella. Later, he changed his mind, which made things easier.
We have found what really helped us, and so after years, he finally decided to tell everybody, it was after the death of his Mother, he finally decided to tell everybody. So I could tell my friends and that was a real big relief. And that brought something really good about as well. Because some people turned around and said, “I know somebody who had overcome their MS.” And that was something new for us, because we were always told it was something that you have, and you need to make do with it, and you need to accept it. Which is true as well. But then there’s always hope. Always, for anything.
Even if people do decide to share the diagnosis with family members and friends, they may be selective about how they do it, and this was something the person with MS and their nearest relative might discuss together.
Ann and her daughter discussed which friends and family to tell and when. They decided that it wouldn’t be helpful to tell some family members in case it upset them.
Ann and her daughter discussed which friends and family to tell and when. They decided that it wouldn’t be helpful to tell some family members in case it upset them.
You mentioned that at the beginning you didn’t want to tell people until things were confirmed. Could you talk a bit about the process of disclosure after that?
Well, [name] and I, my daughter and I talked about who, who we might want to tell and who we wouldn’t. She took the decision of which friends, she’d finished college by then, a lot of friends had gone off to Uni and different things so she decided who she was going to tell. We talked about whether or not to tell Gran and Grandma and for different reasons we didn’t tell either of them. We talked about whether to tell cousins and very close friends and acquaintances with that.
She had a think about it and then she decided, and it was almost like a sequence, so like first of all we told the very, very close aunts and uncles and cousins that live locally and then we sort of said well actually it doesn’t really matter but remember Gran doesn’t know about it because we don’t want to upset Gran, there’s no need to really tell, to tell Gran, she’s in her late 80’s, about that because she really will worry and think the worst. And we said that if [name] started having any symptoms or reactions that were more severe and that were affecting her day to day the way she can live then yes we would tell Grandmas because it would be apparent that there was something wrong, optic neuritis just weren’t and they’d accept that she’d just had a virus or something so, so that’s what we did, we did with that there.
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.”
David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.
David’s wife Sandra has relapsing remitting MS. He explains that she has had periods of remission and relapse. Her symptoms come and go but they never seem to go back to how they were before.
They said it was relapsing- remitting. And obviously, you know, you look that up and you understand that you can go in remission for, you know, a long, long time. For Sandra it certainly seems to have been a bit like that.
But Sandra’s is obviously, it’s definitely plateauing. It sort of tends to have an episode and then you’re left at another plateau, and then you get another episode and then you seem to be on a different level. Because, you’re not really going backwards but it definitely seems to be going sort of like a plateau type basis and I think that’s the thing, So, I think, at the moment, if you have something quite bad, you think that’s another big episode and then you reach a, reach a certain sort of level. I mean you can quite clearly see it now. It’s sort of staggeringly obvious now.
But there’s only been sort of like two or three, I think maybe three really bad episodes. Most of the times over the last five years it’s been fairly constant little bits. Very incremental sort of changes and then all of a sudden it’s quite a big change. Because last year it was the fatigue which just knocked Sandra for six. Virtually all the time she was just really, really tired. But she got over that. And was back, to not normal, she stopped going to the gym, but she was pretty active. Whereas at the moment, she can hardly walk ten yards. And in fact ten yards is probably the most. Whereas hopefully that will, you know, go into remission again and if it does that will be brilliant, because that means, that yes, okay you’ve had a horrible time, but then you’ll go back to being sort of, sort of semi normal. Well that’s what we hope. Because the eyesight was really bad, but then it got better. The fatigue got better. But you’re never quite back at the same position. You’re at a different position all the time.
Kay’s husband did not want to tell his employers about his MS at first, because he didn’t want it to affect his career. Once he told them he received a lot of support from them up to the point of early retirement.
Kay’s husband did not want to tell his employers about his MS at first, because he didn’t want it to affect his career. Once he told them he received a lot of support from them up to the point of early retirement.
As far as his employment was concerned, as I say, we went for many years w-, without saying anything at work. But over time his symptoms, instead of being sporadic and intense, became more chronic, more constantly with him. And, for example, his, his ability to write, his manuscript handwriting slowed down because of the co-ordination problems. To a large extent that was fine. It didn’t stop him doing his job, because he used a keyboard. But then sometimes on the telephone he wouldn’t be easy to understand because of the speech difficulties, slurring words. And there did come a point where we began to think actually, “This is having an impact on your ability to do your job.” Also, commuting was extremely tiring for him. Fortunately he was able to leave home very early and catch a seat on the train going in to work, and then leave early so he had more of a chance of getting a seat on the train coming home. And we did live at the terminus, at the end of the line. Which really helped. But again we reached a point where the, the exhaustion factor meant that he really didn’t have any life because of, of having to continue in that work.
So he did tell his employers, who were absolutely wonderful about it, and they went in to all the right mode about providing him with support. The Disability Discrimination Act was in law by then. So, for example, they agreed he should work from home two days a week, and we did that for quite a while. And then the next chapter was that they would provide a car service to pick him up from home and take him in to London two days a week. So he had increasing levels of support, and, and that was great. But there did come a point in December 2007 where he really couldn’t do the job any longer. It was a, quite a high demanding job intellectually and, and, and he just couldn’t keep up. So he took early retirement on health grounds at that point.
Ann’s daughter, at the beginning of her working life, has decided not to declare her condition yet.
Ann’s daughter, at the beginning of her working life, has decided not to declare her condition yet.
So we took the decision when she was applying for paid jobs that we weren’t going to declare on the form and I don’t know if that’s right or wrong but that’s the decision we took. She’s been in she had a part time temporary job and then she’s moved into a full time permanent job in as much to say they are permanent now and she hasn’t said anything because they’re going through a review and she feels that my disadvantage of in a review when they’re cutting down the number of administrations to support people so she’s still not going to say anything because it’s self declared whether or not you feel you’re disabled or anything, it’s not affecting her doing her job so we feel in that way a bit comfortable about not doing it and it will be her choice when she tells her supervisor and her work colleagues. They are asking her, they are saying a couple of times you look so tired [name] are you okay and she’s battens it off. So that’s where we are with that.
Stella is self-employed and only tells people she works for if she can’t avoid it.
Stella is self-employed and only tells people she works for if she can’t avoid it.
Louise has told friends about the diagnosis but she thinks there is no need for her employer to know.
Louise has told friends about the diagnosis but she thinks there is no need for her employer to know.
Yeah, because I don’t, I suppose I don’t want them to feel sorry for me. And I don’t want them, I just have my professional life and it, you know, at work I’ve got a few friends and I have told one or two, I’ve, I’ve told one person actually, at work, and they’re aware of the situation. But, you know, I go to work, have my working day and that’s kind of a separate life from my home life and, at some point, you know, I might obviously, if when things get worse and I might need time off more or but then of course, I will, you know, have to tell them but, for the moment, I sort of think it’s my business and I certainly don’t want people to think, you know, I can’t do my job properly because I’m worrying and needing to run home. You know, there is that aspect, definitely, that, you know, I just like to go and do what I need to do and, yeah, yeah, so, yeah. That’s the only reason really. I mean all my friends know, all my sort of long term friends and it’s not kind of a secret but it’s just, yes, from the work from the work front I think it’s easier just to, you know, let it, let things carry on as they are for the moment. There’s no need for people to know.
Ray and his wife decided that keeping the diagnosis to themselves was, ‘living a lie.’ Telling others felt like ‘a positive step’.
Ray and his wife decided that keeping the diagnosis to themselves was, ‘living a lie.’ Telling others felt like ‘a positive step’.
Sarah: [Laughs]
Ray: It brings it home to them. And then they realise why you’re saying, “Well, I’m, I can’t go to this party, I can’t go to that”.
Sarah: Hmm.
Ray: “Do you want to come to this house?” “We can’t because the toilet’s three storeys up, the wife can’t get up three storeys” and things like that.
Anthony and his wife now find it easier to be open and say, ‘She has MS,’ rather than trying to explain away her symptoms as they used to do.
Anthony and his wife now find it easier to be open and say, ‘She has MS,’ rather than trying to explain away her symptoms as they used to do.
I have never fought shy of telling anybody of what my wife has because nine times out of ten that’s all the explanation they need. I would say that, you know, my wife now has no problem with telling people. It was just in the early days; either it wasn’t labelled for us yet or she hadn’t got her head around it yet to be able to say, so she now no longer has a problem with saying and once we’d started to do that it was, we found it easier because rather than trying to explain the symptoms, which was what we had to do before, we can just say, “She has MS.”
Carole felt as though she wasn’t allowed to talk about her mum’s MS and had to keep it ‘all bottled up inside’.
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Carole felt as though she wasn’t allowed to talk about her mum’s MS and had to keep it ‘all bottled up inside’.
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I mean it hurt but it’s, I just start, I burst into tears and started crying. I think it was all the emotion of everything that was going on and the school rang my dad , rang home and asked if I was okay. They explained what had happened and that and he told them about our mum. But then, still, nobody came and talked to me from school about it, which I think now they would do, well, I hope they would do. But then again it was, no, no one asked. No one asked anything about her and so it was as if we weren’t allowed to talk about it and had to keep, keep it all, you know, all bottled up inside really.
The ‘last thing’ Anita wanted to do was ‘talk to any teachers’ about her mother’s MS, and she kept it hidden.
The ‘last thing’ Anita wanted to do was ‘talk to any teachers’ about her mother’s MS, and she kept it hidden.
I didn’t have a very good relationship at school. I wasn’t doing particularly well, didn’t really like it, so the last thing I would do would be to talk to any teachers. I was embarrassed to talk to it, to, to talk to my friends about it because, you know, that, that’s just not what, what, you know, we’re teenagers and everybody’s sort of doing their own thing, So, if anything, I think I’ve just tried to hide it from people and probably just do, do the best I could, sort of, even so I’d without you know, behind closed doors really.
Last reviewed March 2020.
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