Relationships and family
Over time, support will be needed with MND and those close to you are likely to become involved in your care. This can raise questions about how relationships and social networks will change. For information and support, select from the following.
“There are many difficult conversations that we’ve had to deal with, about all sorts of subjects. We’ve also had to deal with all sorts of other people and their responses to things, which can be difficult. One thing to note is that we’re all individual. No two people will handle these conversations in the same way.” Person with MND
Explaining a diagnosis of MND to other people may feel difficult. You may worry how people will react or whether MND will change your relationships.
It’s natural to feel this way, but open conversations can help everyone to adjust. These conversations are likely to be emotional, but sharing feelings can help you understand each other’s needs.
You and those close to you need time to adjust to the diagnosis, but the physical and emotional impact of MND will continue to bring change into your daily lives.
If you have MND, you may need to find new ways of doing things as your symptoms progress.
If you are supporting someone with MND, you may have to learn new tasks or take on responsibility for things the other person used to do.
Roles and routines with family and friends may shift. This can be confusing and frustrating, but discussion can help you work as a team. One person is likely to become the main carer, but they will need support too as care needs with MND increase over time. If needed, ask the health and social care professionals who support you for guidance.
People with or affected by MND have often told us they can feel isolated as the disease progresses. Mobility is often affected, which makes it harder to get out and about, or get involved in activities. See our page on mobility and movement for guidance. If speech and communication are affected, joining conversations can become more difficult. See our page on speech and communication for helpful information.
Sometimes, wider family members and friends can worry about intruding when someone has a serious illness. They may be concerned about upsetting you if they ‘say the wrong thing’. As a result, they may not stay in touch as much as before. It can help to keep them informed, so they know what to expect. Often they want to make contact and help, but don’t know what you need.
Our booklet Making the most of life with MND may help you think of ways to maintain your interests. It explores ways to adapt to life with the condition, to continue doing the things you enjoy. It also includes feature pages, where others living with MND share their ideas and experiences on how they’ve continued to do the things they want to do.
You may also want to meet other people with or affected by MND. We have branches and groups across England, Wales and Northern Ireland who provide ways to get together and share information and support, see our local support pages. If this doesn’t feel right for you at the moment, you may find it helpful in the future.
You can also access our Online Forum, which provides a safe space for people with or affected by MND to share experiences. You can just view the posts there if you wish, or sign up to join in the online conversations.
You may have concerns about how MND will affect sex and intimacy. Although MND does not affect sexual function, physical changes can affect sexual expression and the way you feel.
We have resources to help – see information sheets: 13A – Sex and relationships for people with motor neurone disease and 13B – Sex and relationships for partners of people with motor neurone disease.
Telling children or young people about a diagnosis of MND can feel particularly difficult. Wanting to protect younger members of the family from upset is natural, but the symptoms of MND will become noticeable.
Children and young people may rely on their own imaginations and feel isolated without an explanation. Information sheet 4A – Communication about MND with children and young people can help you begin these conversations.
We also have a web section for children and young people.