Telling others

Most people had a partner or other close relative with them when they learnt the diagnosis. Afterwards, they had to decide who else needed to know, and when and how to tell them. Most people wanted to tell close family straight away, but this was often difficult and emotional to do, especially dealing with the different reactions of their children and other relatives. A few did not have their partner present and had to tell them too. 

Gill's first thought was how she was going to tell the family. Mike was calmer than she was. It was hard supporting others when still in shock themselves. [Mike is unable to speak].

He told his son first as they were going to a football match after the appointment. He told his wife when he got home and his daughter and colleagues next day.

His grown-up children have all reacted differently. One son has been more emotional than he expected.

Parents of younger children had to decide how much to tell them, depending partly on their age and personality. One woman told her colleagues immediately about her diagnosis, but waited till the summer holidays to tell her children, when she could spend time with them. Some people wanted to be as open as possible with their children and thought they would guess anyway, while others wanted to shield them. One man felt asking his teenage son about his feelings might upset him more, so they avoided the subject. He told his son he might live as long as Stephen Hawking. Several referred to a booklet on talking to children provided by the MND Association (see footnote). 

He wants his children (aged 11 and 9) to enjoy their childhood. They have not told them everything about the condition but they do not lie to them.

She didn't tell her son (now 13) the name of the condition at first but explained she might need a wheelchair soon. He didn't want to talk about it and found it hard to accept.

She wanted to protect her children (now 12 and 10) from worrying about it but in the end told them she wouldn't get better. The hardest thing is seeing them being her carers now.

Some people had to tell their own parents that they had MND. One man waited several months to tell his parents and advised them not to look at the internet. One woman said her mother was sad about it but had her own illness to cope with at the time. Another woman explained that most of her friends reacted positively but her mother was angry - at the diagnosis, at the lack of a cure and at the thought that her daughter might die before she did. One man also said his mother reacted angrily.

Most people were very supportive but her mother was angry at the diagnosis, and one of her friends also found it hard to accept.

His mother shouted at him when he told her he might have MND.

Many people talked about the dilemma of how to tell wider acquaintances and old friends they saw less often. It could be upsetting to have to keep explaining and dealing with people's reactions. 

It was upsetting having to explain the diagnosis to lots of different people and make them understand how serious it was, but he couldn't move forward till people knew.

They set up an email group to tell people and keep them informed. It gave them great emotional support and showed them the true meaning of friendship.

One woman who was already unable to speak put an article in the parish magazine so everyone in her village would understand. Several people wondered whether to put something in their Christmas cards and what impact this would have on their friends. 

They put a note in their Christmas cards explaining Ken's diagnosis. Most friends have been supportive, but some are unsure whether to come and visit. [Ken is unable to speak].

She told friends she was ill in her Christmas cards, because she thought they'd feel awful if she died and they hadn't known.

A few were saddened that some old friends seemed unable to cope with the news and stopped contacting them. As one woman said, “Some people that we thought would be here and supporting us seemed to be hiding.” Another woman got only two responses to the Christmas letter she sent out explaining her diagnosis. She said, “People don't know what to say and you certainly find out who your real friends are pretty quickly with this business.” Some people chose not to tell everyone they knew.

Some people have been supportive, others have stopped phoning altogether. She has not yet thought how to tell her old school friend.

After her mother was diagnosed she took her on holiday with one of her mother's friends. She was shocked that the friend was unsympathetic because of her own problems.

One woman said although some people didn't know how to react, “friends have emerged who really have that quality of empathy, who really can understand what you're going through… And that's been the most amazing thing - good things happen through all this horribleness.”

Deciding when to tell work colleagues was another issue for many people, particularly if they thought their employer might not be supportive. One man found the matter-of-fact way some of his work colleagues reacted really helpful.

He felt very vulnerable telling his employers but they were fantastic. He liked it when people treated him as if it was 'business as usual'.

Experiences of staying at work or deciding to stop working are explored in more detail in 'Work and career'.

Footnote: