Huntington's disease (HD) is commonly characterized as a trilogy of overlapping disorders that include cognitive, motor, and psychiatric components. But this author suggests that we should add HD stigma to the list. The stigma part of the HD has great negative impact on many, but it is not well studied or recognized for the toxic part it plays through every stage of this disease.
Perhaps, if we thought of stigma as an official part of HD, it might get the attention it deserves.
HD Stigma: Multipronged and Dangerous Stigma in HD is complex with multiple sources and causes:
Public/societal disease stigma: This refers to society's discomfort with, or disapproval of individuals considered abnormal or different because of a medical status like HD. Though the research has never been done with symptomatic HD, we can learn from research in other diseases. Stigma can be caused by physical traits such as in the very visible movement disorders of HD, as seen in Tourette's syndrome [Davis KK 2004], or psychiatric symptoms like the behavioral disorders of HD as seen in other mental illness [Rüsch N 2005], or dementia as in the progressive cognitive disorder of HD as seen in Alzheimer's disease [Blay SL 2010]. Taken alone, each of these 3 individual disease components of HD causes societal fear and disapproval -- or stigma. When you add these to the stigma that comes with genetic disease; HD gets hit with a quadruple whammy of societal stigma.
Stigma drives HD families into the closet where we suffer as a marginalized part of society. Further, the fear of stigma likely prevents those with early disease from seeking medical care, as it does with mental illness [Mojtabai R 2010] or from signing up for clinical trials. Study has shown that when society becomes aware of HD family status, individuals can experience discrimination in employment, housing, medical care and social relationships [Erwin C 2010]. Stigma is damaging even before clinical diagnosis, negatively affecting the quality of life for these individuals and their loved ones [Bombard Y 2012].
Professional stigma: As Alice Wexler has pointed out in historical study of HD stigma [Wexler A 2010], negative stereotyping by medical professionals has been extensive in the past, and may have been partly responsible for the broader negative public image of HD.
Self/internalized stigma: This refers to the pessimistic beliefs, or internalized personal stigma "learned" from society that a person attaches and accepts as self. Internalized stigma is incorporated into thinking style, and causes loss of self-esteem -- blaming oneself for the disease [Livingston JD 2010]. This type of stigma can limit life possibilities that is separate from the disease itself. Further this type of stigma likely interferes with the desire or willingness to seek medical help [Mojtabai R 2010].
Stigma by association: Stigma likely affects all members of an HD family including care-partners as study has shown in Alzheimer's disease [Werner P 2010]. This is particularly true due to the genetic nature of the disease.
Stigma and stereotypes: Sensational stories about those with HD or mental illness who commit crimes or have deviant behaviors are often front-page news; much more so than those "normal" individuals who commit crimes. In fact studies show violent crime is no more common in individuals with "dangerous states" of mental illness than the "normal" population [Tassone-Monchicourt C 2010].
Further, our research and patient organizations may too often emphasize the negative, which in turn can add to the stigma our HD families must endure. As pointed out by Bombard, a Canadian researcher:
"As a consequence of emphasizing the bleak prognosis of the disease and underestimating options for sustaining independence and a good quality of life, negative depictions of living with HD have emerged. Dramatic images of HD have also been created for use in national fundraising and public awareness campaigns. These depictions may be effective in portraying the seriousness of the disorder and attracting public interest; however they have consequences for those who live with the condition by amplifying the experience of stigma and discrimination and thus negatively impact the quality of life for persons and families living with HD" [Bombard Y 2011].
How can we combat HD stigma?
- More disease education? Research says probably not. In fact, recent study suggests that education and awareness of the biology of disease correlates with an increase in stigma [Pescosolido BA 2010]. Though the focus of our HD organizations for a very long time, it likely doesn't help lower stigma.
- More positive images of HD individuals and families? Research suggests that this is helpful, and should be the new focus for combating HD stigma at both the national and the local level. Seeing is believing: research shows that live social contact intervention with patient representatives is preferred, while DVD patient representative intervention is equally effective. Lectures alone are not as useful [Clement S 2012]. Other research suggests that work to reduce stigma is more effective when presented at the local level [Corrigan PW 2012].
- Less negative images? Dramatic negative images may serve to increase the public fear and stigma [Bombard Y 2011].
- More study of HD stigma. Though HD is one of the most stigmatized and "in-the-closet" diseases there are no studies on HD individuals with visible disease. This author believes that lack of study results in under recognition by our research and organization communities on the magnitude and impact of stigma in HD. Sort of like "see no evil" means it isn't there. Because there is already a validated scale for measuring stigma across neurological disease [Rao D 2009], these studies should not be difficult. Because disease is visible in the symptomatic, stigma is very likely higher than that reported in study of at-risk and pre-manifest individuals.
- Setting institutional goals to reduce stigma for HD families.
Author's comments: Stigma is a toxic "disease factor" that severely injures all in HD families. All in our HD communities need to acknowledge the importance of stigma, and learn (until we have our own) from studies in other diseases how best to combat disease stigma more effectively. We -- the families and the public -- know more than enough about the negative in HD -- we need to make policy changes that lead to the creation of a more positive image that can be utilized at the local level as well as national. There is more than enough courage and strength and positive stories that our families can share.
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