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Originally Posted by cme01
I feel your pain when it comes to being in this by yourself. I told one of my friends of 22 years that I had MDS and that it was a form of cancer. I deliberately didn't go into details of symptoms or treatments etc.( she knew I had transfusions all the time but didn't know why) I know people don't like people to talk about illnesses, so I didn't. It made no difference. She hasn't called in or phoned me since I told her. I know she probably doesn't know what to do or say, but, I miss her, it was like losing a whole extended family because I followed her grandchildren growing up in photos and her anecdotes.
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The Internet can actually help with some of this. Rather than hoping friends will call you can send out news about yourself by email (or use social networking sites to let everyone know how you are doing at once). Providing enough information (e.g., an MDS link they can follow if they want) can remove some of the fear and mystery about the illness. Using email can also reduce the awkwardness for someone who doesn't know what to say.
I think it helps if you are matter-of-fact about the medical stuff and remember to talk about whatever you used to talk about too, like sharing news about a mutual acquaintance. Just as we don't want these diseases to define us, we want our friends to know that it's only one facet of our lives.