Illness and other people

Living with someone with ME/CFS can be difficult and worrying. It can affect many areas of your shared life such as doing things together and balancing roles in the family. Families may go through a type of grief reaction. It may be frustrating for them to cope with someone who may look normal but does not always have the energy to do things and has changes in symptoms and ability from one day to the next.

Remember that the person with ME/CFS may feel guilty about the things they cannot do. They may be struggling themselves to come to terms with their current limitations, feeling unwell and need advice on how to best manage their condition. Support and understanding will be very important to them.

People with ME/CFS may not always express their feelings very readily. They may think things which are not always helpful, for example:

“My partner already has to put up with so much because of my illness, I can’t let them know how low I feel as well”

“People don’t want to hear about all my moans and groans so I just tell them I’m fine when really I’m not”

“It’s easier to do things myself to tell someone how I feel and ask for help”

“It’s not like having a broken leg as people cannot see how unwell you feel”

You may wish to show to people the 10 minute online video on the Sleepydust website (www.sleepydust.net) which is designed to help family and friends understand.

We might agree that it is not good to talk endlessely and exclusively about negative feelings, however the key to coping with relationships in any long-term illness is communication:

Be open about how you feel both physically and mentally.
Educate the necessary people about the condition and in which ways it specifically affects you.
Let people know how you feel and what you can and cannot do in a clear and consistent way. It will be harder for others to cope if they have to guess how you are feeling.
Let people know what they can do to help (however small) and give them positive feedback if they do helpful things.

When it comes to communicating with other people your condition and why you may not be able to do some things, some people feel more comfortable saying: “I have a long-term health condition” rather than “I have ME/CFS.” However it is entirely up to you to choose what to discuss and with whom.