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Bad reaction After having so many bad responses I find it difficult to tell new friends or people I meet that I have ME/CFS, mostly because I fear their reaction. I’d been living with my housemate James for a while and we had become friends. Since he often saw me sleeping or looking unwell or in pain, one morning I decided to explain that I had ME/CFS. His immediate reaction was disbelief. “That’s not real, it doesn’t exist. People who say they have that are just faking it.” I argued with him and tried to explain the research, but he had already made up his mind. All James said was: I was wrong, and “people who have ME/CFS are lazy and just want attention”. I felt about two centimetres tall. I was shattered that he could think so little of me. Moving on After then I found it hard to live in the same house as James. Although I believe he is a good person and on most points we are good friends, I found it hard to be friends with a housemate who so forcefully believed the fatigue, pain and other symptoms I lived through in my daily life was imaginary. A few months later I moved out. This time, when I went to check out houses to live in, I told potential housemates up front. Luckily, I moved in with a housemate who is very understanding and showed me that there are people out there with open minds. She has even helped with volunteering with the ME/CFS Society. I still kept in touch with my old housemate James as friends, but for me, it wasn’t the same since I knew what he really thought. Movie Screening I invited all my friends to see ‘I remember me’ when the Society screened it at Dendy cinemas last year. I was blessed that many friends came to support me. I called up James specifically and explained it meant a lot to me if he would come. It would take maybe two hours of his time, and all he would have to do is watch a movie. He agreed. In the movie, friends have told me James was sitting on the edge of his seat. He took a while at the end to leave because he was shocked at the seriousness and how ME/CFS can impact people’s lives. James was apparently moved. Later Months later James invited me out to dinner. I told him I wasn’t well, and he invited me to his place and said he’d cook and I could just relax. When I arrived, I stood chatting for about a minute, then I started to feel dizzy. Without me asking, James immediately fetched me a chair to sit on, and made me a cup of tea. He cooked dinner with ‘lots of vegetables to help me get better’ and encouraged me to rest and recover. I’m glad I didn’t write James off, even though I was so hurt with his reaction when I first told him. I know a movie won’t have this kind of impact on everyone, but in my case, he is not the only friend who came to the movie, and who is now very supportive. For the next screening I intend to invite my friends who were out of town last time and couldn’t make it.
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