Talking about inherited MND in the family: differing perspectives

Talking about inherited MND in the family can be difficult and emotional. Whilst families may sometimes be “on the same page”, family members can also have different approaches to talking about the implications of the condition and their worries and concerns. This section covers experiences of communicating with relatives.

Some people described having open, honest and frank conversations about inherited MND. They felt able to go to family members for support or to discuss anything on their minds.

Karen and her daughter talk about inherited MND frankly and openly; “We don’t sit around crying our eyes out… we’ve got a plan”.

Sometimes inherited MND was discussed “flippantly” or “like it’s everyday stuff”, and at other times involved “long” and “emotive” conversations. Harriet described how “my husband checks in on me and we might have a bit too much red wine and I’ll get teary about it. But I think all probably quite healthy and quite normal when dealing with something like this”.

There are times where inherited MND is in the front of people’s minds and might “crop up” in conversation. This includes over the illness of a family member, when taking part in research, when seeing something about MND in the media, or when noticing possible symptoms.

Although they “surface talk” about inherited MND, Mary and her sister tend to keep their feelings to themselves, because “we don’t know how to deal with it”.

Family members may have conversations around things like pre-symptomatic genetic testing and options when having children, both to share information and discuss their own choices. Whilst some people found it helpful to discuss decisions on pre-symptomatic genetic testing, others weren’t sure of their relatives’ views and decisions, or didn’t feel they could ask. Equally, people sometimes felt it was important to share information and discuss options when having a family with their children and other relatives, but not everyone had had these conversations. Some people felt it wasn’t their place to ask questions or share their opinion.

Kelly appreciated her cousin, Jade, talking to her about genetic testing and options for starting a family, which allowed her to make an “informed decision”.

Whilst people generally respected their family members’ views and decisions about pre-symptomatic genetic testing and having children, it could be difficult when they made choices they didn’t agree with. One person said, “My cousin… has chosen not to have the [pre-symptomatic genetic] test… because she just couldn’t live with the answer if it was positive, and I fully respect that… However, there’s part of me that’s screaming at her, “Don’t have children until you know.” … But it’s not for me to get involved and try and sway anyone else’s decision”.

Even where individuals are generally open, there might be certain things that are upsetting to discuss or think about, such as the possibility of children being affected. As such, people might be selective about who they discuss particular topics with. Lizbeth explained how she had “informative” conversations with her children, but “if I read something on the internet that made me think, ‘Oh, God’, scared me or gave me hope, they wouldn’t be the first person I’d go and talk to about it”.

People had different sources of support around inherited MND; some valued talking to people in a similar situation, whether other family members or people online, yet others talked to the other side of their family who weren’t personally affected, or friends.

Inherited MND is a “sensitive” topic in Adam’s family. He tends to talk to people in a similar situation online, rather than causing stress to family members.

For some people, it could be hard to go to family members with their worries, particularly where they had their own concerns to deal with. Louisa didn’t want to “burden” her husband with worries around inherited MND, especially after his own health concerns, and tried to coach herself instead.

For Kirsty, it didn’t feel fair to go to her mum with her worries around inherited MND. When she was “freaking out”, she reached out to her sister for support.

Lexi had a few conversations with her mum about the implications of inherited MND for herself and her sister, but focusing on this felt “selfish” when her mum was living with the disease.

Whilst some people described having frank conversations, people diagnosed with the disease could find it upsetting to acknowledge or talk about the possibility of future generations being affected. Because of this, not everyone chose to bring up the hereditary implications. Talking with affected relatives could also be difficult because of communication issues and was particularly challenging where a family member also had a diagnosis of frontotemporal dementia (FTD). Georgia Z’s mum was diagnosed with MND-FTD, “She was understanding that she had an illness but didn’t understand… that it could pass. I don’t think she even had the capacity to think about me, which is fine because that was the illness”.

Since his wife’s death, JW has had conversations with their children about their worries and decisions, but he generally feels, “It’s not worth talking about much because there’s nothing you can do about it”. For JW, “our coping strategy most of the time is to ignore a very large elephant”. Georgia Y also talked about ‘compartmentalising’ as a way of coping.

Georgia Y doesn’t let inherited MND affect her life. She is happy to talk about it when her mum needs support, but after that will “put the lid on the box”.

Where MND was in the “background”, it also didn’t come up in conversation very often. People talked about how it wasn’t relevant at present, there wasn’t much to say, or there were other things to focus on. Maggie said, “I think we all feel much the same way, if it happens it happens and then we’ll talk about it but let’s not talk about it in advance”. Other people felt it might become a bigger topic of conversation in the future, if family members were considering pre-symptomatic genetic testing, starting a family, or if a relative developed the disease. Helen felt it would be “pretty miserable” to talk about it all the time. Paul described his approach.

Talking about inherited MND comes in “peaks and troughs”. Generally, Paul’s family have other things to focus on.

“There isn’t anything more to say” was especially true when a gene variant had not been identified in the family. In such cases, family members couldn’t learn more about the particular genetic variant or consider options around pre-symptomatic genetic testing or having genetic testing before or during pregnancy. Alison said, “if I haven’t got that gene, then there’s no information to disseminate to the younger generation at the moment”.

In some families there were people who took the approach of “burying their head in the sand”. Individuals we interviewed described how inherited MND was a “taboo subject” for certain family members, who didn’t want to talk about it, boxed it off, or ignored it. William described how, “It’s not as if it’s a completely forbidden subject, but it’s just one that we choose not to bring up”. This approach could be difficult for those who wanted to talk about how they were feeling, though generally people felt it was important to respect such attitudes. One person talked about how her brother didn’t want to engage in a discussion about inherited MND. She said, “I don’t think, ‘Oh, he should be dealing with it the way I am’…. just think everybody should deal with it in the way that they can cope with it. It’s a massive thing and I just don’t think there’s a right and a wrong way really”. Not being a “close” family also meant that inherited MND was rarely spoken about. This might be because the family was geographically spread out, had drifted out of contact, or fallen out.

In such cases, knowing whether to talk to more distant relatives or extended family about inherited MND could be a dilemma, and people sometimes felt unsure of what their relatives knew already or whether sharing information was the right thing to do. Sharing results of genetic testing after a diagnosis of MND in the family was something some people struggled with, particularly where such information would reveal to relatives that they could be at an increased chance of developing the disease. Talking to children about inherited MND and genetic risk was also difficult for some people.

Whilst inherited MND could be difficult to deal with for families, and cause tensions, some people felt their experiences had brought them closer together. Where a family member was living with the disease, families sometimes had to communicate, and spent more time together than they otherwise might have. People described supporting and being there for one another, appreciating each other and seeing each other in new ways. Kelly said, “I think we all feel a lot closer than normal because when you go through something like this, it’s your support group around you. If anything, all it has done is brought us all incredibly closer.”

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