Telling other people about a health problem isn't always easy and there is no right or wrong way to go about it. Everyone has different circumstances and ways of coping. The important thing is to make sure you feel ok with the way you tell others and, just as importantly, who you tell.
Some people may need to know - your teachers, lecturers or if you are working, your manager. If you then go through a rough patch or a relapse it will be easier to explain why you need time off or why your work is being handed in late.
It can get more complicated when people don't necessarily need to know but may be puzzled by your behaviour or notice you are struggling and not know why. They may ask you outright 'what is wrong' or they may ask other people instead of asking you. These people may be worth telling to clear up misunderstandings and help you to stay in control.
It's natural to want to be treated like everyone else. It can be really frustrating if friends or family try and wrap you up in cotton wool or stop asking you if you want to take part in things. Equally, pretending you are ok and trying to keep up with others when you are unwell might cause extra problems and may contribute to a relapse. If you keep refusing to do things without giving a valid reason (such as having M.E.) those around you might take it personally! Helping others to see the limitations of your illness and how it can fluctuate from day to day can be very helpful and stop you from being misunderstood.
It is a good idea to prepare yourself for some people being misinformed and prejudiced about M.E. They may confuse M.E. with another illness or worry that that it's something you can catch like the measles. Obviously it isn't! Some people may have wrongly heard that people with M.E. are just a bit tired or lazy. Because the illness fluctuates people might not understand why you may be able to do more on one day and less on another. They may be puzzled as to why you look quite healthy. They may not understand why you are unable to think clearly or concentrate. They may not understand why you are not able to do the things they do. Remember that you can do a lot to change people's attitudes and help them to understand how the illness affects you by giving them accurate information on M.E. A good start is to show your friends this website. If it's an adult you may want to get them to visit www.afme.org.uk.
Find out what other young people have to say about telling others in Reality Bytes.
Information produced July 2003
Updated June 2004
