Telling partners about inherited MND in the family

Some of the people we spoke to discussed telling partners about inherited MND in the family and genetic risk. This section covers:

  • Telling partners about inherited MND and genetic risk
  • The impact of inherited MND on future relationships

Telling partners about inherited MND and genetic risk

Some people we interviewed learnt about having inherited MND in the family when they were already in a relationship. They didn’t have to think about telling their partner they had an increased chance of developing MND, because they had been involved in conversations from the start. Harriet described how “this isn’t something I needed to tell him about… he’s been by my side the whole way through it”.

Kirsty’s uncle was living with inherited MND when she met her partner, so he’s been “along for the ride”. She kept him informed as she learnt about reproductive options.

I’m trying to think. I think, yeah, so we were literally only starting to, we’d just started going out around the time that I went to go and visit John for the last time. And so I told him everything along, because I was, I told him I was going to go and visit him and so then it naturally… I explained, “I’m going to go visit him and he’s ill and this is what he has”. And so I gave him the in a nutshell version very early on.
 
And then I think it was over the summer that my mum had her genetic counselling, and I was actually at home, I went home for five weeks over the summer and worked from there. And so we would, I’d be talking to my boyfriend every day and so I relayed that conversation that my mum had had with the counsellor. So yeah, he’s been along for the ride.
 
Certainly, like all of the discussions about, when the information came up about the different options for children, so at that stage I had been, I’d only been with my boyfriend a few months – I can’t remember exactly, maybe six months or something.
 
So that was information that I shared with him, but that’s also quite a big thing to be talking about quite early on in a relationship when kids are a maybe kind of thing down the road, so… But he was really, really great about it and didn’t, he wasn’t overly alarmed or freaked out by the prospect of those sort of discussions, yeah.

 

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Lillian told her partner about her dad and aunt dying of MND early in their relationship, but they have both become more aware of what this could mean for her over time.

I didn’t know him when my dad died, so that’s the marker there really because I met him the year after my dad died. So, at the stage when I met him, I already knew that I’d had an aunt and a father that had died of motor neurone disease, and at some point, relatively early on that would’ve come up in conversation. It wouldn’t have been first day stuff [laughs]. You know, it’s not something you bring up early on, but it would’ve come up in conversation, and it would’ve, I would’ve expressed my fear, but also that I’d approached the doctor and they’d not given me any indication that there was anything to test for or what the genetic link meant.

So, we were together when we found out that my youngest cousin on the older aunt’s side of the family was affected. And I think when I read the letter I must’ve cried, so he understood that I was upset that she’d got it, but then I was, I was obviously confused with her mum having dementia and I couldn’t quite see the link.

So, we would’ve talked about it then and when the email came in from her husband saying that there was a defined gene, we would’ve talked again. So, we do talk about it, and I think the only difference sort of in us is that if he was in my shoes, he wouldn’t have done the test. But he listens to me, he’s understanding.

So yeah, I suppose the answer is yes, when we met at some point early on I would’ve mentioned my fears, but that it was unformed at that stage, it was just a fear and it wasn’t, it’s probably something that I’ve not mentioned very much again after that, after telling him.

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As highlighted by Lillian and Kirsty, discussions around inherited MND with partners often happened in the context of talking about family members who were affected by MND or had died of the disease. For other people it just came up in conversation because of seeing something in the media about MND, rather than being a deliberate ‘big announcement’.

Karen has talked to her partner about the chance she could have inherited the C9orf72 gene variant, but hasn’t made a big announcement because she isn’t thinking of making a serious commitment.

I sort of wove it into the conversation. I have thought about it, I have thought, “Oh, how would I tell a new partner?” because it’s not something that… well it has implications because if you were going to, if I was going to move in with someone or commit to – I mean I wouldn’t get married again, I’ve been married twice, I don’t want to get married again – but if I was [laughs]. If I was to be in a relationship where we were going to live together and make a commitment, obviously if I then get motor neurone disease that’s a hell of a thing for a partner to have to experience.
 
And I would hate for my partner to be my carer. I would absolutely hate that, awful, although that’s what happens a lot of the time by default really. Obviously if you’re ill and you need care then the closest person to you is on hand to provide some sort of care.
 
I think it’s interesting isn’t it, because some people might think, right, I need to make an announcement right at the outset, “look this is what’s, you know, before you get involved with me you need to know that you might have to experience this”. But I haven’t really done that because I’m not thinking along the lines of wanting to move in with somebody or be committed in that sort of way.

 

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However, some people felt it was important to have an explicit conversation, given the possible implications for starting a family and potential future care needs. Dani told her ex-partner about inherited MND in her family “as soon as I met him”, “I thought that was fair to say, but… at the time I didn’t have it and didn’t think I would get it, so it wasn’t that difficult, really”. Liz Z told her partner within the first month or two of meeting him. She recalls the conversation, “It’s not like, ‘Oh, you don’t want to get involved with me because I might get this,’ it was just, ‘This is in my family, this is the chance that I might inherit it”.

Initial discussions with partners sometimes involved talking about pre-symptomatic genetic testing. Although Calum’s girlfriend knew his dad had died of MND, telling her it was an inherited form and that he was going through pre-symptomatic genetic testing to see if he had inherited the genetic variant was a “shock”. She didn’t go with him to genetic counselling appointments because it was early on in their relationship but accompanying him to take part in a research study helped answer some of her questions. Knowing he has an increased chance of developing inherited MND been “tough” for her, which is something he finds difficult.

Not everyone had had explicit conversations about the increased chance they could develop symptoms, but that didn’t mean their partner was unaware of inherited MND.

Georgia Y’s partner is aware that her nan had inherited MND, but what it could mean for her hasn’t really “cropped up”. Instead, their focus has been on dealing with what’s in front of them.

I think it’s just something, yeah, that he, he would have been aware of as and when it was happening with my nan. We’ve never really sat down and had the conversation of like, this could be something that’s at risk to me or like our kids. We’ve never really had that conversation, it hasn’t really cropped up. I could have that with him but it’s just kind of been my decision not to, and it’s just not on my radar. But we could quite easily have that conversation.

I think because we, because there’s been so much kind of… crap, for want of a better word, that’s gone on in my family- so obviously my nan and my uncle died of MND. The year before that, so in 2015, my dad died of cancer. My partner, [partner], his mum has the same cancer that my dad has, and has been fighting that for the last sort of two years. It’s just kind of like, we’re just dealing with what’s in front of us at the moment, and it just would… again, it just feels like such a waste of time to be worrying about something that we have no control over.

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Some people couldn’t remember how they told their partner about inherited MND in the family, especially if they had been in the relationship for a long time.

The impact of inherited MND on future relationships

The impact of inherited MND on future relationships was a consideration for some, especially younger people or people not in a relationship.

Calum questions whether talking about the implications of inherited MND could be difficult in a new relationship; “You feel very vulnerable that people will walk away from you”.

I think it’s going to be really hard going forward to form new relationships with people, if this one were to end, and to tell somebody that, because how do you tell somebody that they can’t have a child naturally with you, that it’s going to be born potentially with a disease that could kill the child, that they have to go through a filtering sort of process or a testing process, and when there’s that much choice out there for other people that don’t have these problems I think your, you feel very vulnerable that people will walk away from you. I think I feel that now that she could walk away any moment, but we, we formed our relationship on who we were before that point.

So do you base your relationship on sort of lies by not telling them and then tell them later if it’s a new relationship? It’s a really hard thing to, to comprehend and I’m grateful that I haven’t really had to deal with that.

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Adam sometimes assumes that if he were to develop MND, he might not meet a partner or have a family. There is a worry that partners might not “stick around”.

There’s almost an inference that I believe that if I was to develop symptoms, all of those plans are over. Which isn’t necessarily concrete truth. But it would make things a lot more difficult, I think practically. But I think also on a kind of social level, the fear is that if you get this disease, if you aren’t already in a very stable, long-term relationship, then potentially you aren’t going to find a partner or if you do, you know, or you’re in the beginning stage of a relationship, the person won’t stick around. And I think as someone who’s quite well versed in how MND manifests, you wouldn’t blame them because it’s quite a traumatic ride, certainly one that’s filled with adversity and kind of a struggle, it would be quite difficult.

So yeah, I think you do kind of presume that those plans are over, especially if you aren’t already engaged or in a relationship in the context, you know, talking about marriage, talking about children. Or just having, you know, a happy, satisfying relationship, I think you generally come away with a feeling of, “Oh, well if I’m not in one, I’m probably not going to find someone who’s going to accept the fact that their partner has MND and the toils that come with that.” Even if you are in one, hopefully one that’s stable and healthy, are they going to stick around?

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Although the possibility of their partner developing MND could be worrying and upsetting, some people described partners taking the attitude of “we’ll deal with it if it happens” or “you can’t live your life worrying about those sort of things”.

As Calum points out, relationships are formed on who people are and worries over inherited MND are just one part of people’s lives.

Finding support around inherited MND

This section covers people’s experiences of finding support from others around inherited MND, including: Support from family members Talking to friends and colleagues Peer support:...