To Tell or Not to Tell – and When?

There have been a lot of posts lately on how people treat those with fatal diseases. Best friends stop calling, people you did not know come through to provide support and assistance, some people feel awkward and don’t know what to say. For the most part, these posts have been for patients who were already at the terminal phase of the disease.

But what about those, like me, who have a slowly progressing disease but are still noticeably disabled in several ways. I talked this problem over with my therapist. But I was not thinking of friends not calling or coming over, I was thinking of people pitying me. I did not want pity. I want them to still see me as “me”. I wanted them to have the knowledge so when my speech slurred, when I could not find a word, when I fell – they would know why and not wonder what was wrong. I chose to tell my staff and the City Manager and told him he was free to forward it on to the rest of the management staff if he saw fit. He did, and I am glad. Since that time, I have told my family and most of my close friends. I made up a letter starting with: “I have MSA” and then explaining what I meant. So far, everyone has been supportive and treated me as they always have. Perhaps because they have been given a long-term understanding and they can observe the deteriorations yet still see me laughing and joining in on conversations, they will not feel any anxiety when the time comes for me to enter Hospice.

My high school is having its 45 reunion next year and I hope to go. I sent the “I have MSA” email to the person in charge with the authority to send it out however she saw fit. By that time, I will almost certainly be in a wheelchair or a scooter. I called a couple I had been close with in high and they said they are going to hold off until the 50^th and I had to say I could state that I would not be able to attend that one.

Reading those posts about the loss of old friends when you fall critically ill has made me think about that problem. I hope I don’t have it, but I believe I know quite a few who will be there on a regular basis to sit with me.