MND Australia
MND Info Line 1800 777 175. 9am to 4.30pm Monday to Friday.

Family, friends & relationships

Finding out that you have motor neurone disease (MND) can be overwhelming for you and your family.

An MND diagnosis might lead to worries about how the disease will affect the mind and body, length of life and what treatments and support are available.

The diagnosis can be a shock to friends and work mates, too. Many people you know will not have heard about MND before and may not have even suspected that you had a serious health problem. Learning about MND can lead to mixed emotions and uncertainty for them. Some people might also want to help out, but not know how.

There are ways you can talk about MND with your friends, people in your workplace and others in your social groups to help them understand the impacts of your MND diagnosis. 

You can decide how and when to share the news and figure out a strategy for managing important relationships that help you, and others around you, better deal with what’s going on.

It can feel hard to speak with family and friends about MND. It can be particularly hard if you have young children. Wanting to protect children from distress is natural. You and your partner may not know when, how and if to tell them about your diagnosis.

LEARN MORE ABOUT TALKING WITH YOUNG PEOPLE ABOUT MND

Your family and friends will probably react in a wide variety of ways to the diagnosis. They may not know what to say.

If you are the one living with MND, your family’s and friends’ reactions can sometimes be upsetting. Many people living with MND have said that their relationships with friends change after diagnosis. Others say that relationships and friendships become stronger.

It’s good to take some time to think about:

  • when,
  • how; and
  • if you tell friends and co-workers about your MND diagnosis

You may not be ready to talk about the diagnosis early on. Having to repeat your story over and over can be hard. Taking time to think about the best approach for you may help you feel more comfortable. If you find it’s too much to tell everyone, you may choose to tell close family and friends at first.

Friends and family are often shocked and upset by the news. They may be:

  • not sure what to say
  • afraid they’ll get upset
  • worried they’ll upset you.

They may even say nothing because they are afraid to say the wrong thing.

Some people with MND may start to avoid people so they don’t have to deal with their family and friends’ reactions.

How you decide to share your diagnosis and handle this is up to you. However, the tips below could help you work through the process and develop a strategy.

Being prepared:

  • write a list of the people you would like to tell in person
  • make another list of other people you know and ask a trusted friend to tell them
  • have some printed information on hand to give to people who would like to know more about MND – see  What Is MND and  More About MND
  • hold a meeting for close friends and family (let them know beforehand it is about something important)

Where you share with others

  • choose somewhere you feel comfortable
  • try to find a place without distractions – e.g. a quiet room, no television

Who do I tell?

  • tell key people at work and ask another person to tell your other colleagues
  • let co-workers, church and community groups, or sporting teams know via a carefully worded email
  • encourage your good friends to stay in touch.

How you talk with others

  • try to accept and welcome offers of assistance
  • give people the MND Info Line number so they can call and talk through any questions they have so you don’t have to explain it
  • try to be prepared for strange or unexpected reactions.

Be kind to yourself

  • write a letter or email if you don’t feel like you can tell someone face to face
  • be yourself and talk about your situation as honestly and openly as you are able.

Some family and friends will become a lifeline for you and your family in the months and years ahead. Your friendship may even become stronger due to MND. Others may find it too difficult to cope with MND and avoid you.

It’s likely that some people will become much closer to you as they respond to your needs.

Sometimes, it’s not easy to accept help from others. You may not feel comfortable reaching out for help. It’s good to let people to assist you, when you feel ready.

Accepting help can assist you better deal with MND. For those offering help, doing something may make them feel more at ease around you.

Accepting help may give you more quality time with your loved ones. It can help with your fatigue, and support your ability to enjoy and take part in events outside the home.

You could try jotting down a list of simple things people can do for you. That way, if someone asks how they can help, you can suggest something. It might be as simple as:

  • asking them to take your bins in and out each week
  • a mate watching the footy or movie with you while your partner heads out to the gym
  • mowing the lawn
  • driving you to a doctor’s appointment
  • taking you to a local event
  • setting up a WhatsApp group so you can let people know how they can help
  • getting involved in events to raise awareness of MND and funds for research and care.

As MND progresses, your relationships with friends and family may change. Conversations about managing symptoms, treatment and future care can be emotional and stressful.

Discuss treatment options with your GP, MND Clinic team and MND Advisor or Support Coordinator. This will help you to make choices and stay in control of your care. It will also help your healthcare team to address symptoms when they arise. This in turn, supports you and your family.

Planning ahead and talking about end-of-life care with close family and your healthcare team may also help. These are hard conversations to have, but they will help you feel more in control and reduce worry about the future.

For more information and advice call the MND Info Line on 1800 777 175 or see the resources below: