As a health professional I shared the fact that I was having predictive testing with my colleagues. I experienced a good level of support while going through the process and waiting for the results. Not to have my colleagues know why I was so fragile would have been very difficult since the process took some time, which added to the overall stress. I did not keep the gene positive results from my colleagues. Although I would have preferred to have only told less people, it is hard to keep secrets in a small working environment.

For a while nothing changed. I had a gene, not a disease and I thought my professional colleagues respected that. However after a while I had a few personal health issues not related to HD and was not myself. My trusted colleagues decided I now had HD. I saw a neurologist and had some Psychology tests done. All proved to be OK. Us gene positive mob have the same risk as the rest of the world in having health problems!! It seems since then that any problem I have, someone relates it to my HD. I wonder how any of them with a gene positive test for heart disease would appreciate me treating them as a cardiac cripple, while they were asymptomatic?

What I am saying is if I could do it all over I would not have told anyone in my workplace that I was having testing done. It was a good support initially but the long-term results have been very traumatic for me. I feel I have to be covering my back all the time, being very sensible and never getting upset, in order to prevent being judged as an HD patient.

I am glad to hear of workplace support for people who are symptomatic. I would have thought working in the area of healthcare there would be an understanding that a gene positive test does not mean one actually has HD.