atopic dermatitis stigma: the visible illness nobody wants to talk about
people living with atopic dermatitis often experience mental health declines, feelings of embarrassment or shame, and discomfort in who they are.
5 minute read
according to the canadian skin patient alliance, as many as 44 per cent of people living with atopic dermatitis develop depression related to their condition, with 64 per cent also experiencing atopic dermatitis-related anxiety.
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atopic dermatitis is a highly common condition, affecting up to 17 per cent of canadians at some point in their lives. it typically manifests before a person reaches the age of five and, due to its chronic nature, comes and goes throughout their life.
the telltale symptoms of eczema are the reason behind its stigma. the condition causes itchy and inflamed skin patches to develop, in many cases, on areas that are difficult to hide, including the hands, neck and face. that said, the entire body can be affected.
according to research, “perceived stigmatization in patients with atopic dermatitis (ad) is common and represents a substantial psychosocial burden.”
dr. annie liu, a dermatologist with dermcafe, a virtual clinic geared toward offering reduced wait times for dermatological care for canadians, works with eczema patients and sees the effects that stigma can have on them firsthand.
“a lot of times it gets unfairly stigmatized and your friends, even colleagues, coworkers may think that you have some sort of skin infection and that’s something really dangerous, even to the point where they don’t want to shake your hand,” she said. “they avoid being close to you.”
she also notes that it’s the misunderstandings of what atopic dermatitis is that drive this stigma, negatively affecting those who have to deal with the disease.
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the myth that drives atopic dermatitis stigma
the most purported and dangerous myth regarding atopic dermatitis that drives stigma is that people believe it’s contagious.
“it is something that is not transmittable, so if you touch someone with atopic dermatitis, you will not get atopic dermatitis yourself because you touch them,” said dr. liu.
yet, people who see the rash often distance themselves from those who have it because they fear they will catch something they are unaware isn’t transmissible. this stigma continues through the perceptions of people who don’t have the condition.
however, there can also be a level of self-stigmatization for those who do have the condition. this is often driven by the non-skin-related effects that having the condition causes, such as being bullied or teased by peers and being treated differently or people recoiling from contact with someone who has atopic dermatitis.
parental distress is also a driver of self-stigmatization in children with eczema. when a child develops the condition and has to go through the ebbs and flows of symptoms, it can cause emotional turmoil in the parents because they care about their children’s experience as if it were their own. children can feel that distress and can end up feeling guilty because of it, leading to their feelings of stigma toward themselves.
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“i’ve seen countless patients where it’s impacted their sense of well-being, their sense of self, their image and then subsequently their family’s lives, especially in children,” said dr. liu.
the effects of atopic dermatitis stigma
people living with atopic dermatitis, whether it be through the eyes of others or themselves, often experience mental health declines, feelings of embarrassment or shame, and discomfort in who they are.
“i’ve had endless patients who have not only been emotionally affected with anxiety and depression because of their atopic dermatitis but also practically with their occupation, where they feel uncomfortable going to work or embarrassed or have to change the way they dress or hold themselves in to conceal their ongoing skin condition,” said dr. liu.
social avoidance is another negative effect of atopic dermatitis stigma. in some cases, negative attitudes toward people living with the condition can start in children as early as three years of age.
these problematic practical and emotional effects foster feelings of isolation from peers, coworkers, and loved ones in a way that drives specific comorbidities, including anxiety and depression.
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“if you do have a skin condition that is visually apparent where others in the world think it’s an infection and change their behaviour towards you because of that skin condition, and it is on top of that, a condition that is recurring, and on top of that, if you can’t get good medical help to control it, you sort of have the sense that you can’t do anything about it,” said dr. liu. “it’s just going to continue being there forever, even get worse, so it’s very understandable how feelings of a low mood or anxiety can arise from that.”
according to the canadian skin patient alliance, as many as 44 per cent of people living with atopic dermatitis develop depression related to their condition, with 64 per cent also experiencing atopic dermatitis-related anxiety.
atopic dermatitis can also affect sleep because of its physical impact on the skin and psychosocial effects.
self-image and self-esteem can also take a hit when a person deals with eczema because, according to dr. liu, “when we feel we have no control over it and that it’s negatively impacting our image, our relationships with other people in the world, it’s hard to imagine how someone could feel confident and routinely happy and functional in those states.”
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the need for awareness and education to stop the stigma
on a grander scale, things such as the media and lack of specialized education amongst healthcare providers also perpetuate the judgement that people with atopic dermatitis face, all of which is driven by a lack of understanding.
because of the lack of understanding, “to the average person, it can look quite scary. this kind of rash that you know is on your face or neck or on your hands where you’re touching people, or you’re a chef, and you’re preparing food, and you wonder and worry,” she said.
“i think it’s a vicious, never-ending cycle where the status quo media misrepresent and misunderstands it,” said dr. liu. “they represent it in a negative light. so, there’s this culture and stigma against atopic dermatitis, which then, in turn, discourages patients from speaking out about it because then, you know, it would be perhaps embarrassing or shameful to publicly admit they have this condition that is being depicted in the media as something scary or strange or bad.”
she also notes that even healthcare providers play a role in stigmatizing atopic dermatitis because, unless they’ve specialized in dermatology, their level of skin health knowledge is slim.
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“even amongst healthcare providers, atopic dermatitis is misunderstood. i’m a dermatologist and received five years of training specifically for the skin,” she said. “but everyone else in healthcare received much less training on the skin than i did.”
so, to change the tides, education and a more accurate representation of the condition could drive change by allowing people with atopic dermatitis to step out from under the shadow of their condition.
“i think (in) media, it is helpful to see those representations, firstly, primarily as a point to understand that there is misrepresentation and misunderstanding and as a catalyst to try for change.”
dr. liu notes that with the rise of social media and online education, there is hope on the horizon when it comes to reducing atopic dermatitis stigma. it will take a “first few brave people to take the first few steps and introduce a new perspective.”
“being brave enough to be the first to speak on it … is a way forward in changing the narrative so that people can feel more comfortable openly talking about it and maybe openly seeking care,” she said.
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