Ann
Age at interview: 55
Brief Outline:
Ann’s daughter first experienced signs of MS at 18 years old. She is not currently affected too severely and tries to get on with life, focusing on the positives.
Background:
Ann, age 55 is a local government officer. She is white British, divorced, with two children.
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When Ann’s daughter was in her second year of A-Levels she started experiencing problems with her eyes. Initially, Ann assumed this was due to the stress of studying and late night socialising, but within a week her daughter had completely lost sight in one eye and was diagnosed with optic neuritis. They both searched the internet for information and independently came to the conclusion that she was experiencing the first signs of MS.
The doctor agreed that she may have MS and referred her to a specialist for a brain scan. By this time she started experiencing tremors in her limbs and described her face as feeling ‘spongy’. The scan results confirmed an MS type attack suggesting she was experiencing the first signs of MS. They were advised that a lumbar puncture would provide a more definitive diagnosis, however the idea of this procedure scared her and because there are no interventions she can benefit from at this early stage, they decided against it. The consultant believed she was likely to have intermittent relapsing MS and they were given contact details for an MS nurse.
Ann describes the day they found out that her daughter had the first signs of MS as ‘horrendous’, but realised that she had to be strong and positive for her daughter’s sake. Ann describes how her priorities for her daughter changed; she would encourage her to only do things she wanted to do and avoid anything that might make her feel unwell. She had finished sixth form and was at a stage in her life where she was making choices about her future. She did not want to go to university and so started volunteering at Ann’s work to keep busy. Soon after the MS diagnosis, Ann developed breast cancer and her daughter devoted her time to caring for her mum. After various treatments and surgery Ann recovered.
Ann’s daughter is at an exciting stage of her life as she is getting married soon and lives with her fiancé, nearby her family home. Ann believes that her daughter living nearby has nothing to do with her MS, but is because she has always been a ‘home bird’. Ann’s daughter now works fulltime in a busy administrative position and she sometimes feels fatigued during work and colleagues comment on this. She has not disclosed her MS to her employers and worries that, because she is young, they may assume she has been out partying.
Ann and her daughter have very supportive family and friends who they can rely on. Ann’s friends sometimes do research on their behalf and are always on hand for a chat. Ann’s daughter still goes out with her friends, but feels frustrated that she cannot stay out as late or go out as often as she would like to. She visits her consultant regularly who communicates very well with her, keeping positive and taking time to explain things. The MS nurse has also been very supportive and helpful. Ann and her daughter maintain a positive attitude and focus on the things she can do rather than the things she can’t.
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.
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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.
Ann thinks her daughter will want to talk to the MS nurse fairly soon about the best time to think about starting her family.
Ann thinks her daughter will want to talk to the MS nurse fairly soon about the best time to think about starting her family.
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Ann’s daughter, recently diagnosed with MS, was worried when Ann got breast cancer. They had a ‘horrendous’ year, but they have both got through it and are looking forward to the future.
Ann’s daughter, recently diagnosed with MS, was worried when Ann got breast cancer. They had a ‘horrendous’ year, but they have both got through it and are looking forward to the future.
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And so, of course, that was devastating to have to tell [name] my daughter and my son because I wanted to protect them both. He was doing his final, his masters, she had this diagnosis so that, that was very, very hard but there’s no way you can’t do it. But then what happened was, was she became the parent, she totally stepped in and wanted to come with me for treatment and made sure I was okay, carried on working and then was being my support at night. And so we have a very, very changed relationship because I suppose I’d always been the one that was the nurturer, the carer and then all of a sudden she was looking after me, worrying about me and saying well what’s the doctor told you today, are you okay and why are you doing that? And so, and she has said in retrospect that it did take her mind off her but it did make her worry even more about what would happen if I wasn’t here because obviously people talk about cancer and immediately think doom and gloom whereas if you’re going to get any cancer, get breast cancer because it’s highly funded, all the research and the treatment you get is, well the treatment I got was absolutely top class.
So, in terms of that it was a huge thing to have to tell a young, you know, a young girl that her mum’s suddenly got breast cancer. But we’ve both got through it, we had a horrendous year but we came through that year, went on holiday, she got engaged, she’s moved out, she’s living independently, I’m through my treatment, everything’s fine and so we’ve got an awful lot to look forward to and I think really that’s about, that’s how we’ve got through it, helping one another.
Ann and her daughter have been much happier since they moved her appointments to a local specialist hospital. Ann thinks the neurologist there is ‘just great.’
Ann and her daughter have been much happier since they moved her appointments to a local specialist hospital. Ann thinks the neurologist there is ‘just great.’
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After her recent experience of breast cancer, Ann thinks about who will support her daughter in the long-term future. At the moment they take things ‘chunk by chunk, year by year’.
After her recent experience of breast cancer, Ann thinks about who will support her daughter in the long-term future. At the moment they take things ‘chunk by chunk, year by year’.
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We’ve talked about if her fatigue does get really bad then we might talk about is she going to go on and say to work actually, you know, I have got this illness and I want to drop my hours down, I want to manage my fatigue by cutting my hours down and how would that work, everything like that. I mean people are doing that anyway for other different reasons in their life, to get a better balance so I think we still see that as work life balance in general and that’s how we sort of, that’s how we look forward to that. And who knows what the future is going to bring, you know, having a family’s not guaranteed for anybody is it, so life continually throws up these things and you then have to decide how you’re going to tackle that, manage it, cope with it and get on with it.
Ann’s daughter doesn’t want to have a lumbar puncture ‘for the sake of’ getting a diagnosis which would make her eligible for treatment. At the moment the doctors feel they can manage her condition without medication.
Ann’s daughter doesn’t want to have a lumbar puncture ‘for the sake of’ getting a diagnosis which would make her eligible for treatment. At the moment the doctors feel they can manage her condition without medication.
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She’s had full body MRI scans, MRI scan in the beginning for her optic neuritis and she has, she had a scan actually about four months ago and the consultant used the language, was well there’s no more because it’s your myelin sheath isn’t it, it’s an attack on your nerves and he said we can see one that was about 10 cm long it’s now gone away so it’s healing up there’ll be scar tissue there. We can see the one still in your eye but they couldn’t see any, anywhere else so and the, he said to her, you know, in all likelihood you have intermittent relapsing MS but, he said, and that’s what we see from your scans but the definitive test is having a lumbar puncture and he said if you have another episode that’s very serious, he said it might control itself but, he said, to get any of the new drugs that are being trialled you have to have a definitive diagnosis.
So then, we then said well what will these drugs do because she’s not having these horrendous episodes, she’s having very, I hate to say it but more minor ones compared to what other people have so would you give her any drugs anyway and the consultant said, “No we wouldn’t” and he said, “and we wouldn’t even like to give her drugs for chronic fatigue unless she wasn’t managing it.” He said, “What our aim is with her is to keep her here with no medical interventions as long as we can” and he said to her, when we saw him last about two or three months, in terms of one to ten he said, “You’re a ten, you know, and that’s how we want to keep you.”
So we haven’t, we haven’t sort a definitive definition, I think we’re all quite clear that that’s what it is and that she could have a relapse at any time but a lumbar puncture’s not going to do anything for us. If I felt that there was some drugs out there or some treatment that she could benefit from then I would be back and we would think about it but she’s vehemently against having a lumbar puncture for the sake of it. So that’s, I think that’s where we are with that.
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.
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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.
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.
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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.