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.
Your family and friends will probably react in a wide variety of ways to the diagnosis. They may not know what to say when you tell them, or when they see you later.
From your perspective, though, the reactions of your family and friends can sometimes be very upsetting. It is sad, but many people living with MND comment on the fact that sometimes their relationships with friends change. However, many people also comment that relationships and friendships are strengthened following their diagnosis of MND.
It’s good to take some time to think about:
You may not be ready to talk about the diagnosis early on. Having to repeat your story over and over may become tiresome or may upset you, so taking the time to think about an approach that will work for you may help you feel more comfortable.
Friends and family are often shocked and upset by the news. They may be:
They may even say nothing because they’re afraid of saying the wrong thing.
Some people with MND begin to isolate themselves to avoid having to deal with their family and friends’ reactions.
How you decide to share your diagnosis and handle this is up to you, but you may like to think about the tips below for helping to work through the process.
Some family and friends may avoid you as they find it too difficult to cope with MND. Others, however, may become a lifeline for you and your family in the months and years ahead and your friendship may even become stronger due to MND.
It’s very likely, among the people in your wider circle, that some new people will become much closer to you as they respond to your needs.
Sometimes, it’s not easy to accept assistance from others, and you may feel uncomfortable reaching out for help. It’s good though to try and allow people to assist you, when you feel ready.
Accepting assistance can help you and others feel better in dealing with MND, and involvement in helping you may help them feel more at ease around you generally.
Accepting assistance may give you more quality time with your loved ones. Assistance may also help with your fatigue, as well as support your ability to enjoy and participate in events outside the home.
It may be worth jotting down a list of simple things people can do for you. That way, if someone asks how they can help, you can quickly think of something you are comfortable with. It might be as simple as: