The issue of who to tell about a bleeding disorder is faced by everyone affected all over the world.
Many of the issues are viewed differently and change as the treatment available in a country improves. When treatment is poor more people choose not to tell people. There are concerns about employment, marriage prospects and in some cases the cultural or religious interpretation of disabilities. As treatments improve, and social stigma reduces, the benefits of informing people, such as safety and having reasonable adjustments made, become more important. In countries like Scotland, this progress was set back by HIV and Hepatits C.
Visible bleeding and bruising on men and women can be viewed very differently. In men it can be a sign of toughness but women can face stigma and assumptions of abuse. Strong taboos around menstruation are also a factor.
These days people make more personal choices. For some it is important to show they have nothing to be ashamed of. In some cases this “honesty is the best policy” approach can reassure schools and employers that the condition is well managed. On the other hand, where treatment is good, some people see no reason to single themselves out as different by telling people about their condition.
Ultimately, there are so many different social, cultural and personal consideration the decision about who to tell is not a “one size fits all” issue.
Haemophilia Scotland are very grateful to Baxter Healthcare UK for there generous support which enabled us to attend the WFH Congress in Melbourne.