M.E. will probably have a dramatic effect on your life. It may affect your relationships, career or education, family life and friendships. Dealing with the mental and emotional impact of the illness is just as important as treating the physical symptoms.
Support is available. If family and friends or professionals don’t seem to understand, Action for M.E., local support groups and other people with M.E. do. Simply getting in touch with other people with M.E. may help you to feel less isolated.
Howard told us:
“I wish someone had taken me aside and said the following to me when I was newly diagnosed: take each day as it comes. Some days will be awful but some will be better. Laugh at the absurdity of life. The rat race is over-rated: why do you want to go back to it? Life is in the little moments. Just because you can’t climb Everest or walk to the shops does not mean you are worthless. Live in the moment. Don’t look back and think what could have been or you will be permanently judging yourself and always fall short of your expectations of what you should be doing and achieving.
“Long term illnesses, particularly ones that have no cure, often lead to the onset of mental health problems – specifically depression. If you stop looking forward to doing enjoyable things that you love; find yourself crying for no good reason; if you feel a permanently low mood that you just can’t shake; if this is all so unbearable that you are thinking suicidal thoughts; if all of this keeps going for at least two weeks – seek professional help from your GP as you may have depression.”
Our friendly peer-support forum, M.E. Friends Online, offers the opportunity to share your experience with other people with M.E.
It’s easy to sign-up, and users tell us how much they value being able to connect with other people with M.E. at home. Our 2015 forum survey of forum users found that:
One user commented: “M.E. is such a difficult and isolating illness to live with, often without much empathy so having this online support is fantastic.”
We also have a lively Facebook page, where you can join in discussions and chat to other people with M.E. Visit our Community page to get involved.
Local M.E. support groups
Local groups can be an invaluable source of information, advice, strength and support. They are run by volunteers, most of whom have M.E. themselves. Some groups welcome anyone affected by M.E., including carers; others also cater for people with fibromyalgia as well as M.E./CFS.
The services offered by your local group may include:
Getting in touch with them means the chance to speak to someone nearby who understands what you're going through. To find your nearest local support group, use your postcode to search in our services directory.
If you would like some ongoing support, counselling may be an option. A good counsellor should be able to offer you help which is flexible, validating and destigmatising, taking your unique symptom pattern and limitations into account.
The British Association for Counselling and Psychotherapy offers a directory of counsellors.