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. This is listed in Part 1 of our ‘Information and Resources’ guide. Remember that no one person will be affected in exactly the same way.
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 if communication: