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.

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.

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.

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.

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”.

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”.

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:...