Telling others

After learning their diagnosis, people had to decide who else to tell and how to tell them. Some people told others straight away, others did not tell anyone for quite a while. Natalia felt it was important to tell people so that they could try to understand what people with Parkinson’s disease experience. She said ‘I don’t want their pity. I want their understanding. I want them to realise what I’m going through.’ She felt that when others saw her looking OK they found it hard to understand that she was feeling terrible.

Several people had to tell their partner, some were not surprised since they had suspected Parkinson’s disease as a possible diagnosis. Ruth who had gone to her appointment with her daughter, found it very hard to tell her husband when she got home. Wendy’s husband was not very supportive, when a neurologist told her that that she might have PD. She got very depressed for a while until she got some support from a friend who was a GP.

When Ruths family started to telephone after her husband told them her diagnosis, she couldnt…

Age at interview 56

Gender Female

Age at diagnosis 47

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And I had to tell my husband which was quite hard telling him, and my son, and then my husband just phoned round my family because they had all been waiting for me coming back from hospital to see what, you know, how I had got on. And that, then they all started phoning to say, Oh, I’m really sorry and everything And that was just making me worse. I just felt, no I don’t want anybody’s sympathy, I just want to be well. That’s all I want is to be well. And I was okay for a couple of days because I think it probably hadn’t hit me properly and then when it did that was when I got really down and depressed.

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Parents of dependent children had to decide how much to tell them. Helen used a book called ‘My mum’s got Parkinson’s’ to tell her young children. She believes that it is only now that they are in their teens that they realise the ways in which she is affected by it. Karen told her teenage children straight away so that they would know why she was upset. She told them that she had a disease which wasn’t life threatening but it would affect the family’s future and they would all learn to live with it.
Rafa and Anna decided not to tell their teenage children.

Anna believes it was the right decision not to tell their teenage children until her partner’s…

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But equally I didn’t want my children worrying about things that they really didn’t need to worry about before they happened. You know, one of them then was in her, then was in her mid to late teens and was looking forward to going off and leaving home, and you just don’t want to have the burden of making that more complicated for somebody than it needs to be. And I think she’s, they’re both very, very thoughtful and considerate people and I think they would worry about him, they would worry about me. And I just, whilst he’s relatively unaffected, I think it’s important to try and protect them from as much of that for as long as possible. So I still think that’s a very good decision.

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Gaynor’s sons, in their twenties, didn’t understand what Parkinson’s disease was until they read on the internet that it was what Michael J Fox had. They understood it after reading his book.
Some people had to tell their parents that they had Parkinson’s. Neil’s parents were very upset because they felt they were to blame, but felt reassured when they realised that no-one in his family had had the disease. Gaynor’s mother-law found it hard that she should be well when Gaynor was not.
Some people told no-one or only a few people for quite a while after they got their diagnosis. With medication controlling symptoms well, they could carry on as normal without anyone knowing. Some people worried how others would react and thought they might be treated differently.

Sharon didnt tell her teenage children for six months because she didnt want them to start…

Age at interview 57

Gender Female

Age at diagnosis 49

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The bit that I was determined to stay in control of was my relationship with my children. Because I knew as soon as they knew about it the tables would turn and they would become the carer and I would become the cared for. And they were older teenagers, they were too young to be doing that. I wanted them to be free to lead their own lives. So I didn’t tell them for six months, I kept it secret. And in the end my girlfriends persuaded me to tell them. They said they wouldn’t trust me again if I didn’t tell them the truth. So I sat them down and just said, I’ve got an illness that meant I would shake a bit So they asked me questions but I didn’t give it a name because I didn’t want to scare them. I don’t know who was kidding who, modern child, hit the internet, and eight minutes later came back and said, Mum, you’ve got Parkinson’s diseas So, fine, right, yeah.

When I told my children it did definitely alter the relationship significantly. But then they pulled themselves together and got on with their own lives. So that they dip in and out of care for mum. But most of the time they’ve got over that bit and they’re just getting on with their lives which is what I wanted.

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Tom told only a few people because he worried that he might be treated differently; when he did…

Age at interview 40

Gender Male

Age at diagnosis 27

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And then you go through a period of denial. Where you don’t really want to tell people about it because your symptoms aren’t bad. And with Parkinson’s your symptoms are, vanish at the beginning through the medication that you’re taking so no one knows you have Parkinson’s. And actually you can keep it a secret. And I did that for a while, for about six months only telling a few people.

And then I realised that my life had, had changed irretrievably and that actually I couldn’t deny it any longer. I had to sort of tell people about it. So I started telling friends and coming to terms with the Parkinson’s. And I was surprised with the reaction actually that most people were, they, they, I was worried that there might be a stigma attached. I was worried that people might treat me differently but actually that wasn’t the case at all. And instead I was very pleased with the way people responded. And everyone was, didn’t sort of treat me with pity or sympathy. They treated me as they always had done. And actually if anything they were more inclined to sort of ring me and sort of, and help out, which was great.

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But not telling others also created difficulties. Fiona’s husband wanted to protect their children from worry and so decided not to tell anyone about his diagnosis. Fiona found it hard to keep her worries to herself but respected his decision. Later when the children started to notice that their father was walking differently, they decided to tell them.

Fiona and her husband are glad that they waited a while before telling their family because it…

Age at interview 46

Gender Female

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My husband decided he felt it wasn’t fair to tell our children because they were only, sort of early teens. And we weren’t going to tell our parents because again we didn’t want to worry them. We felt that we were worried about it and for the time being we just decided that was it, we wouldn’t say anything to anybody. I found that quite difficult because, that’s [not] my nature that I, I find it easy to talk about a things but I respected [my husband’s] wishes.

I think really one of the things I know that I had in my head [was] that everything would change overnight that, the symptoms I was reading about would all start to happen straightaway. And I think because, although I said that we didn’t tell people at first, and I know it sounds a bit bizarre but it felt like, sort of almost like our little secret, in a way that, that time just gave us, a bit of confidence to know that things were stable and, you know, things were carrying on as normal and that gave us a little bit of confidence that when we did share the news with my parents and the children we were able to say, you know, look, you know he is okay, he’s coping alright and it affects everybody differently. And it did give us confidence to think well, you know, perhaps things weren’t going to change overnight and everything.

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Anna hadn’t realised how difficult it would be to not tell anyone about her partner’s diagnosis.

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Because we didn’t know how things were going to go and felt very, very conscious of the fact that as soon as people knew that he had Parkinson’s disease, people would perhaps begin to treat him differently or make different assumptions or react to him differently. So I think both of us felt it was good to protect him from that. I certainly did, just because of other experiences that I’ve had and, you know, you see how people do change once people have had a diagnosis of various different kinds.

I was just saying one of the things I hadn’t anticipated, about making that decision about not telling people, was I’ve actually found it quite hard not to become more withdrawn just in friendships and life generally. Because there’s times when people have said things, when you want to be able to say, Actually this is what I’m worrying about Or somebody makes a joke about something, about Parkinson’s and you want to say, you know, don’t say that in front of him But there’s been a number of occasions when I wish I could have talked to close friends about it. And I just, there’s only a couple of people who are, who I trust well enough and are separate enough from my day-day life or are very, very close to, that I’m very, very close to and I know absolutely would protect those confidences. But there’s a lot of other people I’m close to that I would have liked to have been able to talk to. And it, the subtlety of the way that it actually changes your relationships with people and makes you more sort of withdrawn in those relationships is something which I’ve found quite, definitely found quite difficult to deal with over, over the last little while.

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Some people talked about their experiences of telling friends and acquaintances they saw less often. Gaynor, who outwardly has no signs of Parkinson’s, found it difficult dealing with the shocked reactions of some friends she hadn’t seen for a long time at a school reunion.