Huntington’s disease is a genetic neurodegenerative disorder that affects a person’s body, mind and behavior. The disease has been portrayed in several works of fiction. In this thesis, I will describe what symptoms patients with Huntington’s disease have, according to the medical literature. I will also examine how the disease is portrayed in fictional literature. To what extent are the literary depictions of Huntington’s disease in concordance with the depiction of the disease in medical literature?
In this paper, I will try to assess whether or not the fictional work gives a correct picture of the disease, compared with what medical articles present.
First I searched for and read articles on Huntington’s disease, focusing on review articles that describe the psychiatric, cognitive and behavioral symptoms of Huntington’s disease. Symptoms described in medical articles included, but were not limited to, depression, anxiety, psychotic symptoms, obsessive-compulsive symptoms, apathy, irritability, aggressiveness, impulsivity, and cognitive problems such as difficulty with memory and with taking initiative. In addition, patients have characteristic involuntary movements that have been the hallmark of the disease for 150 years.
I read Saturday by Ian McEwan and Devil’s Dance by Richard R Karlen, novels that portray the disease in different ways. McEwan’s character with Huntington’s disease is described as an evil villain, while Karlen’s character, though also affected by the disease, is portrayed as an ordinary man battling the sickness. In comparison with the medical literature, McEwan paints a dark picture of the disease. Karlen’s description seems more medically correct, although there are some smaller issues here as well.
Fictional authors have the freedom to depict diseases in ways that differ from the typical description of the disease in medical literature. However, in order not to offend patients or families of patients, it is for the sake of empathy, important to consider their feelings, and avoid exaggerating a disease that already is stigmatized due to the all-encompassing manner of the symptoms.