the hidden toll of eczema: social, financial and mental health
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"i started to realize the financial toll last year when i had to fork out hundreds of dollars in treatment." - samuel dunsiger, pictured.
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everyone wakes up in the middle of the night from time to time, but in my case, my skin keeps me up. in between sleep cycles, i get the insatiable urge to scratch my dry, itchy skin. it reaches a point that my bed sheets often get blood stains from how hard i scratch.
it’s not just dry skin that impacts my sleep — it’s atopic dermatitis, which is otherwise known as eczema, a chronic skin condition that causes inflammation and is characterized by irritation, itchiness and often swelling.
the canadian dermatology association estimates that about 17 per cent of canadians have — or will, at some point in their lives, experience — eczema, which usually manifests as the presence of dry, itchy and scaly patches of skin. although it’s typically considered a trivial condition, as it often comes with many mild to moderate symptoms, its effects can run beyond simple physical implications.
it makes sense that eczema is typically associated with the visible manifestations of the inflammable skin condition. but, beneath the surface, there’s a hidden toll for people who have eczema that can severely impact their quality of life.
dr. sandy skotnicki, founder of the bay dermatology centre in toronto, notes that there are many implications associated with the skin condition — many of which we don’t often think about. “even if eczema doesn’t look that bad, there’s a lot happening under the surface that impacts the person’s quality of life.”
the eczema society of canada (esc) corroborates this hidden toll. a previous survey found that 82 per cent of respondents indicated their daily life is impacted by eczema. the survey highlighted sleep, anxiety and avoidance of social activities as the three most common areas that are affected by the disorder.
eczema and sleep disruptions
the fact that my eczema repeatedly keeps me up at night is a testament to the frequent impact that the skin condition has on sleep.
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it’s common for many people with eczema to experience flare-ups at night — and the esc survey notes that 73 per cent of respondents have faced interruptions or lack of sleep, which is often a result of their itchiness. “they’re not getting into rem sleep or deep sleep because they’re constantly itchy,” dr. skotnicki says.
the dermatologist describes the condition as being trapped in a perpetual itch-scratch cycle — basically, as she says, eczema makes the skin itchy, which then causes you to scratch, but that only makes you itchier. and this cycle, she notes, can severely get in the way of sleep.
dr. skotnicki also cautions that the impact can extend to intimacy and relationships with significant others. “one of my clients was a young police officer who had a lot of trouble wearing a uniform because it made his eczema worse.”
she recalls the client telling her that he had to sleep in a separate bedroom because his flare-ups were keeping his wife awake as well. after he went on medication, she explains, “he said he slept in the same bed as his wife for the first time in two years.”
eczema and mental health
like many chronic disorders, eczema is often associated with mental health issues, such as anxiety, stress and depression. in some cases, this can manifest as avoiding going out and engaging in social activities.
dr. skotnicki notes that the association between eczema and the development of mental health issues is common, as the skin condition can alter a patient’s appearance, which can then in turn lead to issues of self-esteem, which can prompt the development of mental health issues
while more conducive evidence may be needed, research further suggests scientific causation of effects on the brain leading to depression stemming from inflammatory skin conditions.
the esc study similarly suggests that eczema “affects social, sexual, academic and occupational functioning. it is also associated with increased rates of depression and anxiety.” among participants with eczema, the survey documented higher rates of avoiding intimacy (40 per cent), missing work and important life events (32 per cent), as well as changing careers or giving up certain activities (30 per cent).
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these findings resonate with me as well, as there have been occasions that i’ve avoided leaving my apartment due to flare-ups — and the anxiety that comes with it. when i muster the courage to go out, i opt to conceal my eczema-affected hands by wearing gloves or keeping my hands in my pockets out of shame and embarrassment.
eczema can burn a hole in your wallet
perhaps, a lesser known, but still relevant impact is the economic implications for living with eczema, as people often need to dish out significant amounts of money for specialized creams, skin-care treatments and appointments with specialists to manage the condition.
i started to realize the financial toll last year when i had to fork out hundreds of dollars in treatment. this included topical creams prescribed by my family doctor, as well as over-the-counter moisturizers. for nearly three to four times a day, i had to generously apply both ointments to the affected areas of my skin — and then, when i ran out, i had to cough up some more cash on refills.
as dr. skotnicki highlights, it’s a double-edged sword as there is a variety of medications readily available to treat eczema, but it also means the costs can add up. “the issue is whether or not the patient can afford the medication.”
but she adds that some companies have compassionate care programs to help alleviate the costs for people who don’t have insurance or may struggle with affordability. while it is time-consuming, dr. skotnicki says there are options.
beyond the emotional factors that impact daily living, a key concern is the lack of access and wait times to see a dermatologist.
the esc study identified that 69 per cent of participants reported wait times of at least three months to see a dermatologist, with some waiting more than a year.
yet, despite the lack of access to a specialist, dr. skotnicki points out that proper treatment starts with seeing a dermatologist, which can present a barrier for people struggling with eczema who may not be able to access a specialist or will need to face long wait times until they see one.
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“the mental health issues, lack of sleep and quality of life are downstream problems that emanate from the condition,” dr. skotnicki emphasizes. “the issue that it comes down to is access to dermatologists who can treat this condition.”
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