The Inherited Shame: Coping with disease (video!)

In Part II of “The Inherited Shame”, Thorvald Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations.

When Thorvald Steen got diagnosed with facioscapulohumeral muscular dystrophy at the age of 15, his parents asked him not to tell anyone. For many years he didn’t mention the disease at all.

But in his mid 20s everything changed. He became more and more active in trade unions and in politics. He also started opening up to close friends – and eventually the woman who later became his wife.

After a while, Thorvald was also able to see his own strengths:

– In many ways I’m a top sportsman, like many of my friends in the Huntington society, because you have had your enormous problems and difficulties, and you have solved them, he told Astri Arnesen, president of the European Huntington Association.

He found ways of coping: going out into the nature, talking with people: – We all have to find our own arenas, he said.