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Multiple Sclerosis: friends & family experiences

Reactions to an MS diagnosis

Waiting for a diagnosis, sometimes over many months or years, and wondering what could be wrong, was a worrying time for everyone involved. For some people finally getting a diagnosis of Multiple Sclerosis (MS) came as a shock. But it was also a relief, especially when a ‘worse’ diagnosis had been feared. 

 

Chez was more concerned about a brain tumour than MS so the diagnosis was, in some ways, a relief.

Chez was more concerned about a brain tumour than MS so the diagnosis was, in some ways, a relief.

Age at interview: 42
Sex: Female
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While he was in hospital he had lots of tests done and he was basically told by the consultant that he either had a brain tumour or he had MS We were told to come back a week later which in that week I found out more about MS and I found out more about brain tumours, because obviously you get to hear something like that and you get very, very worried. He had some more tests done the following week and he, we both went into the office and he was told that he had MS. Out of the two that was the better of the two. We came out of there, we both hugged each other because we were in a relationship at the time but weren’t married. We were due to get married three months later and basically we went out, we bought a bottle of champagne, bought a take away and actually celebrated him having MS rather than a brain tumour. The going out and getting the bottle of champagne and the take away was a sort of release mechanism I think for both of us, just knowing that it wasn’t a death sentence. It was a, a life sentence but it wasn’t a death sentence and that was the happier of the two diagnoses we, we could have had.
Stella and her partner were both afraid that he might have cancer, though they didn’t speak about their fears. Sarah Z had worried about ‘the dreaded Motor Neurone’ so, again, hearing it was MS was better news than she had feared. Looking up symptoms on the internet had made Karl think about motor neurone disease, too:
 

Karl and his partner were relieved that she didn’t have a ‘much worse degenerative neurological’ condition, or a ‘worse’ type of MS.

Karl and his partner were relieved that she didn’t have a ‘much worse degenerative neurological’ condition, or a ‘worse’ type of MS.

Age at interview: 40
Sex: Male
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There was a lot of relief because once you know what something is you can deal with it and up until that point there was a lot of fear of the unknown. If you look on the internet to, to diagnose yourself there’s all sorts of things that can come up that are a lot worse than MS, so there was a little bit of relief that once we’d identified it we could sort of take steps to combat it. 

Were there particular things that you feared?

Ahhh, it’s difficult to remember now. There were things like Lou Gehrig’s disease, I think, was one of them and there’s a lot of sort of really much worse degenerative neurological things that she could have been diagnosed with. And the type of MS that she had, which was recurring remitting isn’t, isn’t quite as bad as other types so there was sort of that to cling to as well. 
Even so, people we spoke to used strong, sometimes very emotional, language to describe their reactions when a relative or friend was diagnosed with MS. Commonly people spoke about being surprised and shocked. Robin was ‘thunderstruck;’ for Anthony and his wife it was ‘a body blow,’ and for Kay Z and Ann it was ‘a bolt out of the blue.’ It was as though ‘time stopped,’ when Christine’s boyfriend told her he had MS. Often people did not know much about the condition and sometimes assumed the impact would be worse than it has been.
 

Robin never noticed his wife had any symptoms, so he was ‘thunderstruck’ by her diagnosis. His only knowledge of the condition came from seeing her mother die with advanced MS.

Robin never noticed his wife had any symptoms, so he was ‘thunderstruck’ by her diagnosis. His only knowledge of the condition came from seeing her mother die with advanced MS.

Age at interview: 72
Sex: Male
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I never noticed anything I suppose that’s because my wife’s mother also had MS very badly and by the time I knew her she was incontinent, in a wheelchair, practically unable to speak, she died at the age of 58. And it was a very, very upsetting experience. I just didn’t want to know about MS frankly. So it was my wife who realised that she’d got MS and she went along to the hospital and got diagnosed and came out and told me and I was thunderstruck, I couldn’t believe it had happened twice in the same family especially with being assured by the doctors that there was no genetic component to MS which we now know is not true. 
 

At the time, Louise thought the diagnosis of MS was worse than cancer because there was no cure. But that was many years ago and they have learnt to live with it.

At the time, Louise thought the diagnosis of MS was worse than cancer because there was no cure. But that was many years ago and they have learnt to live with it.

Age at interview: 49
Sex: Female
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And I remember, actually, the evening he was in there, he stayed overnight, that the nurse had given him a book about MS, so it was kind of fairly obvious that’s what he had but none of us, I didn’t know anything about it at all. Our children were very young at the time. I remember just going to visit him overnight and thinking, “Oh, well, it’ll be fine. It’ll be some.” You know, but then obviously, he had, was given the diagnosis the next day and came back and I remember being absolutely devastated. So because it’s the kind of very well, like a final, there’s nothing that you can do about MS. 

Cancer, I always have thought and always said to people, cancer, you think oh, well, you can kind of fight it and you can have treatment and with MS, really there isn’t, there are treatments available but there is certainly not a cure and I think, you know, I remember just being extremely, both of us being, you know, devastated when we first got the diagnosis. But, of course, since then, so that was ninety seven, that’s really, you know, however many years ago that is, we have managed to learn to live with MS or Chris has learnt to live and I’ve learnt to cope to, you know, look after him, to some extent.
The shock of hearing that a close relative or friend had MS could cause people to feel numb. Sometimes people felt they could not or did not want to believe it. Other times the diagnosis led people to reappraise their life in relation to the life of the person with MS.
 

Ann felt that everything would change for her and her daughter. She wanted to keep strong for her so she could support her in living a happy and fulfilled life.

Ann felt that everything would change for her and her daughter. She wanted to keep strong for her so she could support her in living a happy and fulfilled life.

Age at interview: 55
Sex: Female
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The day we got the diagnosis, the day we saw the consultant and he said to us that’s what it was likely to be, it was horrendous, it was really, really hard. Because you have to keep really strong, you know, for my daughter I thought well, you know I need to be the strong one here and get her through it and let her know that it’s not the end of the world and everything like that. 

It was a bolt out of the blue.

You know, that was the very phrase I just had in my mind that other people have used exactly that phrase because I was going to ask you what is that like?

Yes, yes.

Suddenly, everything changes.

It’s, it did, everything absolutely did change because probably typical parent her older brother was at University, you know, so academically very flying through. I always knew that my daughter didn’t want the same type of progression that her brother had had but, you know, I thought that she, you know, A Levels and then go to higher education and then, you know; sort of have as many options that she could open to her. But all of a sudden this illness made us reassess actually what life was all about and, you know the main, my main priority then that she was healthy and happy and if academic routes and things like that weren’t going to help her feel well and feel good about herself then I totally shifted it and mentioned doing things like, you know, are you revising, do you need any help, do you need to do this, to all of a sudden saying ‘Look, [name] do it if you want it. You can come back and do it next year, you can come back to this, you know, just let’s get you through this next period.’ So, yes, it fundamentally I think made me reassess what I needed to do to support her for her to be happy and fulfilled in what she did and that was to find a job and to be an adult. She’s got quite an old head on her shoulders and she wanted to work, she wanted to earn money, she wanted to contribute in that way and that’s what she’s doing.
 

Louise couldn’t take in the news of her son’s diagnosis at first. She felt she was in a kind of denial.

Louise couldn’t take in the news of her son’s diagnosis at first. She felt she was in a kind of denial.

Age at interview: 61
Sex: Female
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Well, I remember sitting listening to this phone call and writing on a piece of paper, ‘MS’ and my mind just went blank. I didn’t know a lot about it. I didn’t know how severe it was going to be. The doctor had said it wasn’t anything to worry about, but at the back of my mind I knew it was something a bit more serious than that. I knew there was no cure for it and I knew that once you had it you had it for life. We were kind of just sort of numb, all of us. I remember going out for a walk and meeting some old friends, I must have started telling friends about it, "Oh, it’s MS" you know, like you’ve got measles or something and they said, "Oh terrible news", you know, "We’ve heard" and I was, "Fine. It’s nothing to worry about". And it was a kind of total denial and I did try and find out something about it . I went on the website, the MS Society, and got some information but I still couldn’t take it all in.
Some people we spoke to had different reactions from the person with MS. For Ray, the diagnosis was ‘a big shock,’ but for his wife it was ‘a blessing in disguise,’ because it explained her symptoms and took away the feeling that she was going mad. Different reactions could be affected by peoples’ previous knowledge or experience of the illness. Kay Z said that the diagnosis, ‘Hit us like a bolt from the blue,’ and that she learned the meaning of the words ‘your blood runs cold.’ But her husband was ‘less panicky’ than she was because he didn’t know anything about MS, whereas she had encountered it before and saw it as ‘very, very bleak.’ It is important to remember that MS can affect people in very different ways and it can be hard to predict what will happen to each individual.
 

Paul’s wife was more shocked than he was because of her friend’s experience of MS, but it has not progressed as fast as she feared.

Paul’s wife was more shocked than he was because of her friend’s experience of MS, but it has not progressed as fast as she feared.

Age at interview: 76
Sex: Male
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My wife spent about a week in the [hospital name] and at the end of that time, after having various tests, the doctor in charge came up to her and said, “Yes, you’ve got MS.” This was a profound shock to her in particular because we had a friend, who had MS, who’s subsequently died, and she was in a really terrible state. And my wife expected with that diagnosis to go the same way. The type of MS she’s got is primary progressive MS, so we expected it to gradually progress. Fortunately, perhaps because she was diagnosed relatively late stage, in her life I mean, not in the progression of the illness, she was about fifty seven, when she was diagnosed and we have known people, who if they get MS when they’re young, it seems to progress faster than it does if you’re diagnosed later. 
 

Norma’s son was relieved to know what was wrong. She was very upset but his acceptance of the diagnosis helped her feel less burdened by it.

Norma’s son was relieved to know what was wrong. She was very upset but his acceptance of the diagnosis helped her feel less burdened by it.

Age at interview: 70
Sex: Female
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By the time he was referred to a neurologist and then sent for diagnosis, that was coming into three years. However he was sent to have an MRI scan at [hospital name] which is in [location] and within two weeks the neurologist had called us in for the diagnosis and he was diagnosed with primary progressive MS. 

To my surprise half way through the diagnosis I left the room because I felt so burdened and so confused. After about 20 minutes he came out because I could hear his voice asking the receptionist ‘Where is my mum?’ and she says ‘Oh she’s in the ladies’ and his reply was ‘No she’s not, she’s somewhere crying, tell her to come and take me home and give me my lunch’. 

I brought him home that day and he was really, really and truly happy. I just couldn’t understand why he was so happy and I said, ‘Why are you so happy?' He says, ‘Mummy just pass me the phone and I will telephone my friends and tell them what happened,’ because at that point he was still able to use the telephone, the tremors wasn’t to a great extent. He rang his friends and told them he had MS and he was laughing and smiling. So after it ended I said to him, ‘Why is it, again I’m asking, why is it you’re so happy?’ And he said, ‘I now know what is wrong with me. I was really terrified not knowing what was wrong but now I know, that’s it.’ And I felt, all the burden that I was feeling inside sort of subsided because I thought to myself, immediately, if he can accept it so can I. I know nothing about MS but I’m going to do my best to keep him, you know, health wise, the best I can.
 

Jean’s son felt relieved that he didn’t have a brain tumour. But it was a blow to Jean and the family who were ‘groping around in the dark’ with no one to talk to, while Jean was trying to protect them and ‘soften things’ for her son.

Jean’s son felt relieved that he didn’t have a brain tumour. But it was a blow to Jean and the family who were ‘groping around in the dark’ with no one to talk to, while Jean was trying to protect them and ‘soften things’ for her son.

Age at interview: 71
Sex: Female
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After all the tests were done, completed, we were seen finally by a registrar at [place name], who told me, and my son and his wife, because he was going to get married in a month’s time, exactly a month’s time, told us that he had something, rather like MS. There was no confirmation.

At that point that was it. That’s what we were told. We were, although I’d got that inkling of what was wrong, you still feel very shocked and it was such a blow. My son was relieved. That was his first reaction to it. He thought he had the brain tumour and so he thought he was given a space and he thought, well, the news wasn’t so bad. 

But even so we were still groping around in the dark. There was no one else to talk to. I think if we’d been able to just sit and compose ourselves after that. Talk to someone with some knowledge who could have set our minds at rest, or may be, even if we’d had a telephone number to may be contact somebody to say look help. Just having a bad moment at the moment can you please help. But there was nothing. It was a case of go away. Forget about it and live your lives

Well unfortunately we couldn’t do and working on the District my, I came in contact with lots of patients with MS, and unfortunately we saw quite severe cases. So it all preyed on my mind. So I felt very little support for my, well to enable me to give my son, because I was trying to protect other members of the family and myself and really to try and soften things for him.
 

From reading about MS Alice was more pessimistic about the diagnosis than her partner, who was reassured it was ‘mild’. She feels doctors should be more open about all the different ways MS can develop.

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From reading about MS Alice was more pessimistic about the diagnosis than her partner, who was reassured it was ‘mild’. She feels doctors should be more open about all the different ways MS can develop.

Age at interview: 35
Sex: Female
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I think it took about a year and a half to get a diagnosis. It was a long time. Him being reassured, me being paranoid, me constantly pushing him and, eventually, the news came in. This had a huge impact on me, more so than him, definitely, at this time because I’d read everything about it, so I was so aware of the various problems of the disease that could happen, whereas he’d been reassured by the consultant, “You’ve got a mild form of MS. It won’t affect your life expectancy. You’re fine. Off you go.” It says on his letter from the doctor. It says, “He took the news extremely well.” Whereas I did not, at all. So from that point on our perspectives of his illness were very, very different. Him being the coping, capable, positive, optimistic one and me being the bleak, pessimistic, all consumed one. So and then it stayed that way like for the whole number of years, ninety eight, so thirteen years.

So that’s a brief summary of since nineteen ninety eight to two thousand and eleven. It’s been pretty quick I suppose. So it’s primary progressive.

Yeah, it doesn’t sound to have been that mild form that was declared at the outset?

Yes.

Can you tell me more about that?

Well, I feel a bit cheated by that diagnosis but I could say it helped him because in his head, “My life expectancy won’t be affected because a consultant told me so. So when I’m in hospital with pneumonia and everyone thinks I’m going to die, I don’t think I will because I trust what the doctors tell me.”

So in some ways perhaps that early diagnosis of, “It’s all going to be fine. You might have a bit of a tremor and maybe a walking stick.” Maybe he’s internalised that and thinks, “Well, that’s how it’s going to be.” I feel very angry. I feel totally cheated. I feel that we should have been told that things could get really, really nasty because, as I understand it, a huge percentage of people with relapsing-remitting, it becomes progressive over, okay, for some people it happens over decades. He has been extremely unlucky that it happened just like the life of the person I read about in the book all those years ago. It’s, the form is exactly identical.

With the primary progressive form?

Yeah. I mean the only, my only relief that I get is that in the instance I was reading about this woman was screaming and shouting swear words and that was the only thing she had left. He has just been content, dignified, as much as you can be. Yeah, just content. Until the last few months really, really content in a way that he wasn’t particularly as an able bodied man. He was a very kind of intense, quite depressive character. Actually, he seems, weirdly, excluding the last few months, happier in his little bubble of a world.
Even though there is no cure for MS, having a diagnosis was seen by some of the people we spoke to as a good thing because it helped to explain symptoms and gave you more chance to try and take some control of your life. For Ray, and his wife, the diagnosis gave you ‘something to pin the symptoms on’. John talked about the power of being able to ‘name your devil.’ For Paul Z and his wife, the diagnosis gave the opportunity of working with health professionals to ‘put a plan in place, to help us.’ For Anthony and his wife it was important to ‘start to get our heads round it,’ to research the illness and begin a process of acceptance. 

Last reviewed March 2020.
Last updated July 2018.

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