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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.

Age at interview: 45
Sex: Female
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And I think I got the… I think he phoned me, to tell me about the diagnosis when I was at work and I’m a freelance teacher, so, obviously, the first thing I told my student, which probably wasn’t a good idea, but any how she didn’t know what that was and so she confused it with ME and she said, “Oh, is that when people are tired all the time?” And after that I told two friends who were also doctors, and because doctors are quite level headed and so in a way they are good people to tell and so, yes, and so one of them gave me a hug and the other one, anyway, I just told over the phone, but then I talked to [partner's name] and [partner's name] actually didn’t know, didn’t want anybody to know that, that he had been diagnosed with MS, because he didn’t want to be branded as a sick person or as an ill person and he didn’t want that people reacted to him with compassion. And so he told me not to tell anybody. And that was really difficult to have this shock of the diagnosis and then not to be able to tell, not even my closest friends. That was quite difficult.

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. 
Stella remembers that her student confused MS with ME (myalgic encephalopathy, or chronic fatigue) and others remembered getting a similar reaction. 

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.

Age at interview: 55
Sex: Female
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So when we got, the day we got the actual diagnosis, we had a feeling that it was going to be that but we weren’t sort of saying it to one another and we decided not to tell a lot of the other family members until we actually knew what was going on. I told her brother, her older brother, but couldn’t tell her grandma because we didn’t want to upset her before we knew what it was.

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.

Age at interview: 50
Sex: Female
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Well, the thing is my friend was actually diagnosed with MS about the year that I met him but he didn’t actually tell me about it until two years ago. And I had a feeling that something was wrong a little prior to that because of the way in which he was moving. We’d agreed to meet and go to a pub for dinner and it was Friday, I thought it’d be nice to relax and have a drink but we actually had to run to catch a bus to get to the pub and he seemed to be struggling quite a bit. He’s a little taller than me so I thought, “Okay. Well, maybe as a tall person, maybe he can’t maybe run so fast.” Or maybe he was tired or something but he seemed to really be struggling to move. We had to try and run for this bus and I sort of just, you know, did my usual thing and ran along and caught it but I had to tell the bus driver to wait quite a few seconds for him to turn up. And when I looked behind me I saw that he seemed to be making a hop and a skip kind of movement and really sort of struggle to move. Running, it wasn’t a run really, it was really a sort of a hop and his leg was dragging and I thought, “Okay. Something is up here.” But I remember sort of saying to him on the bus, “Are you okay? You seemed to be.” I said, “You seemed to be struggling, you know, to run. That wasn’t really a run was it.”

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.” 
Another big decision for people with MS is whether to tell their employer. Close family were often consulted about this decision.
 

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.

Age at interview: 49
Sex: Male
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And did they give it a name at that time of any particular type of MS?

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.

Age at interview: 49
Sex: Female
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One of the big decisions we had to make at the beginning was whether to tell his employers. It was, it was a big decision and initially we decided not to. And in fact it wasn’t until many years later that, that he actually told his employers that he was suffering from MS. Even though he was working for the Civil Service, which is a massive employer and very much in the vanguard of promoting equal opportunity at work and, and those sorts of things, he didn’t want his career to be in any way affected by perceptions from his employers. 

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.

Age at interview: 55
Sex: Female
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We also had to look at the issues of her telling people at work and in the work situation and you, you would like to think that anybody who is interviewing a young person would not take the fact that a young person has potentially a very serious disease that may progressively get worse as a negative when they’re at an interview when they’re going for a job but, you know, I’m a manager I’m out there in a very, very highly competitive world and you can’t say that everybody will do that. So we had a big debate about was she going to declare her MS on her form, she’s not had a formal diagnosis because that’s the lumber puncture, we’ve been told it looked very, very like she had that but there was no way of knowing how it would progress. It seemed that her only symptom at the time was chronic fatigue apart from the odd bits and pieces she was getting and that. 

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.
Close relatives also have to consider whether to tell their own employer or work colleagues. Sarah Z didn’t have to think too much about this: she went straight back to work, after being with her husband to receive the diagnosis, and told the head teacher at the school where she worked. Others have chosen not to tell people they work with for the moment, for a variety of reasons, but say they might do so in the future.
 

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.

Age at interview: 45
Sex: Female
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So I told my friends, I have no difficulties telling my friends, and I’m really grateful that I can now, and I’ve also told my family, and he has told his family now, meanwhile. And who I haven’t told, if I didn’t have to were the people I work with. So, not my students, well, unless I had to because I had to cancel work. And not the agencies I work for, obviously, because it’s not a good idea if they think that I’m not available to take on any more freelance work, obviously. So, if I could avoid it I didn’t…didn’t tell.
 

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.

Age at interview: 49
Sex: Female
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Are there any particular reasons, other than what you’ve talked about in terms of wanting to have a normal life? Why you don’t want people that you work with 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 jointly decided not to tell anybody about her diagnosis at first, mainly because they knew so little about MS that they didn’t know what to say about it. After some years they decided to be open about it. Ray thinks this helps to inform and educate people about the condition.
 

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’.

Age at interview: 17
Sex: Female
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Ray: Illness brings a sense of reality to your life as well. Because how you have, how you have to adjust your life. Like, at first when the wife was first diagnosed we, we didn’t really tell anyone because we didn’t know much about it ourselves so it’s pointless telling anyone because we couldn’t tell them how, anything we didn’t, we, we’d got nothing to base any of our reasoning on. But ultimately we found that we was living a lie because not, not telling people. And then we, we decided to make a positive step and say, “Right, you’ve got MS, let’s move on, let’s get on with it”. And, and, and, so then it become sort of common knowledge and some people they asked me about it, and I say, “Do you actually want to know about it? Or are you just tentative enquiry?” I said, “Because if you really want to know about it I can tell you everything about it”. And some people do say, “Yeah, I’d like to know the ins and outs of it”. And, and they, they sit back and, “Phwaw, I never dreamt anything would be like that”. 

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. 
Sometimes the person with MS had a different approach to telling from their partner. Stella felt it was ‘a real big relief’ when her partner decided to share information about his diagnosis. Anthony has ‘never fought shy’ of telling people that his wife has MS. But he thinks that, at first, she didn’t want to admit it to herself and so didn’t want to talk about it. As she has grown to accept her condition she now has no problem telling people about it and this, Anthony says, has made things easier.
 

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.

Age at interview: 43
Sex: Male
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I remember once, she was asked by an acquaintance of ours, when he saw her walking, and he enquired why she was walking as if she was, ‘walking on ice,’ was I think the phrase he used. And she used the line of, oh, it was an old war wound. But he pressed further and said, “Have you hurt your leg or something or whatever?” And only then did she say, “Look. I’ve got MS.” She didn’t like admitting to start off with at all. She took a while to get her head round the fact that she could even say to people that she had MS. She didn’t want to admit it to herself to start off with, but even when she had admitted it to herself she didn’t want to particularly admit it to other people and certainly not use it , at the other end of the spectrum, using it as an excuse in any way. And anything that advertised to other people that she wasn’t normal, [laughs] for want of a better phrase, that she wasn’t fully fit anything that sort of gave that away, she wasn’t keen on. So, so yeah, that’s a stigma isn’t it. Yeah, she just wanted to carry on as before I guess.

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.” 
The experience of young people and teenagers living with a parent with MS can be somewhat different. Carole and Anita both felt very isolated. Nobody around them talked about the diagnosis or about life with MS and neither did they. Carole’s friends knew, but they didn’t discuss it. Her school only found out when they called her father to try and find out why she was so distressed one day by a simple wasp sting. Even then no-one from school came to see her to talk about it, but she thinks that would be different these days. Anita’s teachers never found out about her mum’s diagnosis and she didn’t talk to her friends about it.
 

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’.

Age at interview: 53
Sex: Female
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I remember one time at school, I was in a science lesson and a wasp crawled up my leg, up my trousers and stung me and I just, I started crying. 

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.

Age at interview: 37
Sex: Female
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So other things I think that were, were difficult for me were, you know, at school I had no-one. So I had nobody taking an interest in, you should do this homework, you should do, how are you getting on at school? There, there was none of that. And I, I really didn’t do very well at school and I think a lot of that was because I focused on yeah, caring for my mum. I had a whole load of issues that were, were around sort of caring for her. And nobody at school, no teachers, nobody knew what I was going through. It was never picked up, it was never discussed and I would never certainly sort of tell anybody. 

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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