Whether you’ve been newly diagnosed or have been living with M.E. for some time now, telling friends, family and children you have the condition can seem like a daunting task. Many people have never heard of M.E. and are quick to dismiss it as laziness or something that’s all in the mind, but that simply isn’t the case.
Loved ones who don’t understand what a family member with M.E. is going through can be educated to help and support them.
You could show them one of our publications, or awareness-raising films about M.E., available in the resources section.
Tory told us:
"I tell people that living with M.E. is like living on the breadline when everyone else is a millionaire. I am so poor I have to ‘spend’ my energy very carefully. They cannot expect to do the normal things they do when they are with me as I can’t afford them."
The Spoon Theory is very popular – you may have seen references to spoonies on social media. Shared by Christine Miserandino, an American woman living with lupus, it’s a great way of conveying that it’s like to live with a chronic health condition.
Some people may still be unable – or unwilling – to understand what it’s like to have M.E. Remember that there are those that DO understand, and can offer support, be it Action for M.E., your local M.E. support group, or a forum such as M.E. Friends Online.
“Value your friends and relatives who stick by you. Don’t chase after the fair weather friends who just don’t 'get' M.E.: they are not worth keeping. You will be bombarded by helpful advice from friends and family who have heard of such and such as a magic cure or treatment for M.E. Don’t snap their heads off: they mean well. Smile politely, thank them, then research the ‘cure’ and see what the clinical results are for it before committing to spending your precious money chasing a magic bullet.”