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: connecting with others online and in-person

Support from family members

People found support around inherited MND in many places. Partners and other relatives were often a valued source of support, with whom people could share their worries, discuss anything on their minds, or talk through issues like genetic testing. Robyn’s cousin is “somebody I could speak to”, “I remember just going over to her house, I think with a bottle of wine or something, and just sitting and the pair of just cried and laughed and talked and whatnot… she’s always said to me, ‘if you want to chat, we’ll talk’”. Kirsty describes how in other situations in life, she and her sister may not have always turned to each other, but here, “she was the only person who was going to be feeling exactly how I felt”.

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.

However, family members sometimes have different approaches to talking about inherited MND. Not everyone felt able to go to relatives for support – some weren’t close, others worried about upsetting or burdening them, or had family members who didn’t want to talk about it. In some families, people felt that it was hard for others to understand how they were feeling, particularly if they had no one ‘in the same boat’. Calum said, “you want to be able to talk to people that are at the same risk as you, so that they can understand the thoughts and processes and decisions that you’ve made, and when you don’t have people that understand that it’s really hard”.

One person described how their sibling receiving a negative pre-symptomatic genetic test result changed the way they communicated around inherited MND – having tested positive themselves, they felt they no longer got the same level of support or had someone who could understand.

Talking to friends and colleagues

Friends and colleagues were another important source of support for some people.

Richard values the support of his close friends around inherited MND. It is sometimes easier to talk to them about his feelings and concerns than members of his family.

Niki’s friends were aware of what was happening over her husband Stuart’s illness. She has talked to them about inherited MND because “it’s interesting and it’s part of who you end up being”.

Jade describes how, “when I first found out, it was my friends I leant on for support. Now… it’s not something we all sit and cry about by any means, it’s just something I can mention in passing… So, it’s not an elephant in any room; it’s just life, part of life”. For Kirsty, “it wasn’t something that dominated a lot of my conversations with friends, but they always held space for me to talk about it whenever I needed to”.

One person had a friend who had another genetic condition in her family. She found talking to her friend more valuable than talking to her sibling, who was generally quite different to her. Knowing there are others in a similar situation “just makes you feel less alone”.

The Covid-19 pandemic sometimes made it hard to get support. Louisa said, “I know I can talk to any of my friends, especially my best friends, about what was going on… but I don’t because I can’t see them. It’s not the right time for that stuff”.

Others had discussed inherited MND with friends but didn’t feel a need to talk about it regularly.

Lexi’s friends have been supportive, but she doesn’t want to talk about inherited MND; she’d rather just “enjoy their company”.

Georgia Y has found that people rarely understand what inherited MND is, or they want to reassure her that she won’t get it. She doesn’t feel a need to talk to others as it’s not “productive”.

As with talking to family, people sometimes worried about burdening friends, didn’t want to be treated differently, didn’t feel others could understand, or didn’t think talking would help. Because of this, not everyone had told friends about inherited MND in their family.

People had a range of views around talking about inherited MND at work. Some people felt able to talk to colleagues, like Karen who worked in social care before retiring, which she described as a “caring profession where we were dealing with human stories all the time”. Kelly appreciated the support of her boss and colleagues over her pre-symptomatic genetic testing process. Paul is happy being open about the family history of inherited MND at work. In his experience, awareness seems to be increasing, with celebrities talking publicly about living with MND.

People also spoke to work colleagues about what was going on in the family because they needed time off, for example to look after a family member living with MND, to attend genetic counselling appointments, or take part in research studies. Louisa felt it was important to tell her boss about her mum’s diagnosis of inherited MND, because of how it could impact her emotionally. She said, “we haven’t discussed it since and that’s fine, it’s just an awareness, so I think that safeguards me working. And I know that because of that I could ring him up… if I felt like that, so that’s good”.

However, not everyone felt it was something work needed to know- they saw it as “private” or “personal” and didn’t want people to treat them differently or make allowances.

Peer support: connecting with others online and in-person

Whether going to support groups (in-person or online), using online forums or social media groups, or attending events and meetings, seeking peer support was met with a range of responses. Some people found these groups helpful in connecting with others and hearing how they approached decisions like genetic testing. They valued being able to find and share information, such as on research developments and opportunities, or issues related to living with MND, including on aids and equipment.

In Sam’s experience, there isn’t much support available for family members living with the knowledge they could develop MND. Facebook groups have been “helpful and reassuring”.

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. Although he finds online forums helpful, he says “you have to be quite strong-minded not to take all the information at face value and to explore some of the things people say, but then disregard other opinions that might not be so helpful”.

Adam points out that connecting with others online was a “saving grace” during the Covid-19 pandemic, when in-person events were not happening. Further, online options are convenient for people with mobility issues and carers who may struggle to find free time. Others, however, preferred in-person events. Lizbeth highlighted the value in talking to others: “It’s like when you’re pregnant and you go to an antenatal class and you can all compare swollen ankles”.

People were sometimes interested to get in touch with individuals they had something in common with, such as having the same genetic variant. Liz Y had enjoyed going to a group for younger people affected by a variety of conditions at her local hospice and missed this support when she moved away. Others felt you needed more than a disease in common to build a relationship, such as Alison who became friends with another healthcare professional who contacted her on an online forum.

Even when people used these kinds of groups, or had in the past, they pointed out that there were difficult parts, such as finding it sad or distressing to hear about other people’s situations. Anthony said, “you hear of a family where there’s been like nine cases of MND… I suppose it’s hard, the fact that it could potentially run through the family”. Sam questioned whether this could be “too much” for a lot of people, and Harriet was considering leaving the group she had joined, as it is “not what I really need right now”. People couldn’t always associate with the experiences of others. JW found that others were often angry about poor treatment and support, which wasn’t his experience.

Facebook groups on inherited MND are a good place to hear about research, but Karen doesn’t use them as much as she did when her mum and uncle were alive, as it can be “scary”.

Mary found it helpful to speak to others going through the same thing but stopped using online forums when she found herself getting “a bit obsessed”.

Another difficult aspect of peer support was seeing people with more advanced symptoms of MND. This was the case for people living with MND, carers, and people living with an increased genetic risk. Lizbeth said, “it just makes me uncomfortable… it’s a little bit emotional. It brings back memories… and that’s when I think, ‘Oh, God, could that be me?’”

People caring for a relative with MND had a variety of experiences of seeking support from other carers. Adam connected with others online to get advice on how best to support his mum, who was living with MND. Georgia didn’t go to support groups as she had worried about how her mum, who had struggled to communicate, might react if she took her with her; she would have loved to talk to other carers of a similar age to herself.

Niki and Sheenagh didn’t feel support groups were always helpful.

Niki found she was mostly offering advice when part of a WhatsApp support group. Everyone came with different points of view, and for her it didn’t feel supportive.

Sheenagh wasn’t interested in going to support groups for carers when her husband was alive; everyone’s situation is unique and it’s not how she wanted to spend her time.

Not everyone felt they needed peer support, either because they had enough support from those around them; didn’t think it would benefit them; didn’t have time or want to spend their time in that way; worried it could be scary or upsetting; or had concerns over being visible on certain platforms. As no one in her family was living with MND, Robyn wanted to put it out of her mind. She pointed out that “other people’s grief and things like that, it’s a lot when you’ve just gone through it all yourself”.

Some individuals we spoke to would like more opportunities to connect with others in a similar situation. Looking back, a few people felt there were points where peer support might have been helpful, including over pre-symptomatic genetic testing.

Looking back, Kelly feels going to a support group could have been helpful, as she might have benefitted from sharing her feelings with people who could understand and had no expectations of her.

People sometimes felt this kind of support could be helpful in the future, particularly if they or a family member developed symptoms.

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