Clinicians must help reduce psoriasis stigmatization
In this issue of Healio Psoriatic Disease we focus on stigma experienced by patients with psoriasis.
This stigmatization likely dates to biblical times when the term tzaraat was used to describe skin disorders such as psoriasis that renders one unclean. Eventually tzaraat was translated to mean leprosy, which is possibly an early example of psoriasis being falsely considered contagious.
Stigmatizing beliefs are hard to eradicate from society. In 2019 we conducted a survey of lay persons across the U.S. and found that nearly one-third of those surveyed stereotyped people with psoriasis as contagious, 20% endorsed the myth that psoriasis is due to poor hygiene, and nearly 40% expressed not wanting to shake hands with someone with psoriasis. More than 50% expressed that they wouldn’t want to date someone with psoriasis.
Stigmatizing beliefs about psoriasis are less prevalent among health care professionals, although nearly 13% of medical students characterized psoriasis as not a serious disease and nearly 30% expressed that they would not want to date someone with psoriasis.
Not surprisingly, patients with psoriasis report high levels of stigmatization. For example, we found that two-thirds of patients reported that in response to seeing their psoriasis-affected skin, they anticipated others would stereotype them as contagious and 16% thought others would avoid shaking hands with them. Nearly 40% of patients reported others stare at their skin disease.
Younger patients and those with lower socioeconomic status reported the greatest degree of perceived stigma.
Physician reported outcomes — such as the amount of body surface area affected by psoriasis or the disease’s Physician Global Assessment score — did not correlate with the degree of patient perceived stigma. Therefore, it is important for clinicians to specifically ask patients about suffering caused by stigmatizing effects of psoriasis.
Beyond these numbers and statistics are the power of the words behind the patients’ lived experience with psoriasis. John Updike, arguably one of the greatest American fiction writers who won the Pulitzer Prize twice, documented his lifelong battle with psoriasis in his essays “At War with My Skin” and “From the Journal of a Leper.” He recalled his third grade teacher who “rummaged in my hair and said aloud ‘Good heavens, child, what’s this on your head?’’ Echoing the statistics we described on the impact of psoriasis on romantic relationships, Updike lamented, “... we are loathsome to love. Keen-sighted, though we hate to look upon ourselves. The name of the disease, spiritually speaking, is humiliation.”
While highly effective treatments dramatically improve the quality of life of patients with psoriasis, less is known about how skin clearance impacts the pervasive effects of having experienced stigmatization has on our patients. Furthermore, clinicians need to keep in mind that there is a penalty to pay when patients experience worsening of psoriasis from withdrawal of treatment. For example, one trial found a disproportionately greater degree of worsening of Dermatology Life Quality Index score for the same Psoriasis Area and Severity Index score when treatment was withdrawn.
The dramatic advances in the scientific understanding of the genetics, pathophysiology, treatments and comorbidities of psoriasis have not been mirrored by better understanding and acceptance of psoriasis in the general population. Those who manage patients with psoriasis have an important role to play in reducing the pervasive stigmatization our patients experience in their daily lives.
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