family smiling to camera

An MND diagnosis means change, which is likely to affect 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 to maintain what is important to you socially. 


Select from the following options or search for content by need with our:
Care information finder

“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

How do I tell people about the diagnosis?

Explaining a diagnosis of MND to other people may feel difficult. You may worry how this will affect your relationships and family.

It’s natural to feel this way, but open conversations can help everyone adjust. These conversations are likely to be emotional, but sharing feelings can help you understand each other’s needs.

Open discussion is important, as it can help you plan ahead and support each other.

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 like 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.

See our guide Telling people about MND for ways to open difficult conversations with family, children, friends, colleagues and health or social care professionals.

See also Section 5: Family, children and friends in our guide Living with motor neurone disease for helpful suggestions.

How are my personal relationships likely to change?

You and those close to you need time to adjust to the diagnosis, but MND will continue to bring change into your daily lives, relationships and family.

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.

See  our main guides for help:  Living with motor neurone disease and for carers,  Caring and MND: support for you.

How can I maintain my interests, hobbies and social life?

People with MND and their carers often tell us they feel isolated as the disease progresses. Maintaining interests, hobbies or your social lives can be challenging.

Mobility can be 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.

Our booklet Making the most of life with MND is designed to help you find ways to maintain your interests. It explores ways to adapt to life with the condition and continue doing the things you enjoy. Others living with MND also share how they’ve continued with activities 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, all offering Local support. 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.

What about intimate relationships?

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.

For more information and guidance, see our booklet Sex and relationships.

How can I explain MND to children and young people?

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 MND symptoms will become noticeable.

Children and young people may rely on their own imaginations and feel isolated without an explanation. They often find ways to cope if involved.

See our guide Telling people about MND for ways to open difficult conversations with family, children, friends, colleagues and health or social care professionals. 

We also have a web section for Children and young people. including a page for parents and guardians. This web hub explores our resources for younger family members, to help them understand the changes around them. It also provides information about our wider support and services for families.

Page last updated: 17 January 2023
Next review: January 2025