Lack of Understanding
Throughout your illness you will come into contact with many different attitudes towards ME. Some people will understand and some won’t. The only approach is to explain to the person what you are going through and give them information to read for themselves. This will help some people; but others will be unable to understand no matter what you say or do.
This can be extremely hard to deal with, especially if you were previously very close to the person. You may even find that seeing them is too much, if they keep making tactless comments. You have to do what’s right for you and if that is stopping contact, at least while you are severely affected, then don’t feel guilty. You can rebuild relationships when you are better.
Many doctors also have a problem believing in ME, despite the findings of the Government Report. Some still say that ME is all in the mind. This is because they cannot find any obvious cause and therefore put it down to psychological problems. Every day they see patients with illnesses that they understand and have been taught what to do. They cannot understand ME and it makes them feel threatened not knowing what to do. They can’t come to terms with things that they can’t cure.
Avoid these professionals if possible. If not always keep copies of letters both sent and received, and write down/record phone conversations, for later reference.
Don’t let other people’s insecurities affect the way you live. You are not going mad and there are people out there who understand and believe you. Denial is the first stage of acceptance, and although it may take a long time, hopefully one day everyone will understand and believe in ME.
Support this Site.
Surviving Severe ME is run on a voluntary basis. If you find the information helpful please support this site.