The Profound Suffering of Chronic Itching

by Alexandra Brewis and Amber Wutich

The itch—an unpleasant sensation on the skin that makes you want to scratch, sometimes desperately. For most of us, it's merely a transitory annoyance. But living with chronic itching without relief is truly miserable, with a serious impact on not just the body but psychological and emotional well-being.

Because itching is treated as a very mild form of pain, with no test to explain its severity other than someone’s own reports, it can be easily dismissed by others, including medical professionals. Itching, like pain more broadly, falls into the category of “unseeable” symptoms—those that cannot be objectively measured and must rely on patient reports.

Those with medical conditions that include chronic itching describe unkindness from others as a common challenge in their suffering. Expressing other forms of physical pain, by contrast, typically creates an empathetic connection and elicits sympathy and support. Itching, it seems, does not, regardless of how bad it really is.

There are hints in the medical literature that not only is itching an overlooked form of pain, but the scratching it produces can be stigmatizing. One revelatory study interviewed adults with conditions characterized by chronic itching (pruritic dermatologic disorders). Almost all those interviewed reported how chronic itch had profound emotional effects, such as depression, guilt, panic, and feeling isolated, because the resulting scratching elicited such negative responses from others.

The inability to hold back on scratching in public was explained as embarrassing and humiliating. Frustrating, too, as family and friends would tell them to “just stop it.” Yet this doesn’t make an itch stop itching, and resisting scratching all day every day is simply not possible.

People reported avoiding social events because of the worry they would scratch in front of others. They also explained how relative relief from itch encouraged them to become more social.

One soon-to-be-released study of members of a French patient advocacy group with chronically itchy prurigo nodularis report that more such stigmatizing reactions to their visible skin are associated with not just interruptions to work and leisure functioning but also extreme sleep disruption. Quality of life is not just undermined by itching, but by the social avoidance and isolation it creates.

Why Scratching is Stigmatized

Why is social scratching treated with such a lack of empathy, making others react by pulling away? After all, it is a normal, evolved body reaction.

Historical analysis of itch in the context of earlier European medical practice shows that it is equated with infectious disease but also moral lapses, such as lack of hygiene or social inferiority. The same is seen in literature. As Shakespeare’s Troilus and Cressida notes, ‘‘I would thou didst itch from head to foot and I had the scratching of thee; I would make thee the loathsomest scab.”

To social scientists, the connection between social rejection and visible scratching makes sense, even as it causes emotional pain. Not only is skin imbued with deep social meaning by humans, but also things humans learn to associate with disease—like all-over scratching—can also trigger a physical disgust response.

Moreover, prolonged scratching resulting in skin damage can intensify the social stigma further. Prurigo nodularis (PN) is a relatively rare disease and experts currently have an incomplete understanding of its causes, but the nervous and immune systems are both involved. Chronic scratching in response to a relentless itch creates the main observable symptom—raised bumps on the skin in the places it is possible to reach. The bumps, in turn, intensify the scratching. And so the stigma is further heightened, especially when the nodules are on the hands or face where hiding them from others can be difficult or impossible.

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Managing Embarrassment

The stigma in conditions like PN can extend into medical practice, too, with doctors not understanding the connections between the social suffering of conditions like PN with both the symptoms and treatment. There is little current research on the stigma of PN, but we know from decades of stigma research by social scientists that when patients feel judged, trust erodes, as does treatment adherence. Sometimes people who feel judged or otherwise misunderstood for skin conditions avoid medical treatment entirely.

Relatedly, there has been debate in the medical literature about whether psychiatric factors are the cause or the consequence of PN. Luckily for patients, the latter explanation seems to be gaining traction in the medical literature. One recent, if small, study suggested that nearly half of PN patients had at least one psychiatric comorbidity—most commonly anxiety. From the perspective of the stigma literature around invisible diseases like ME/CFS, we know that telling people the pain is “all in their head” sets the stage for sometimes severe emotional harm.

The real test is what happens when people are relieved of PN’s dreadful itch. New and better drug treatments for conditions like prurigo nodularis are coming, reflecting advances in understanding itching from fields like neuroscience. These will hopefully not only help with the pain but also provide an escape from the stigma.

Convincing clinicians who see patients experiencing chronic itch of what it really is to live in that body is part of the needed treatment package. Medical professionals are humans too, and an under-reaction to itch as "real" pain or dismissing scratching as “just psychological” is explicable. But it creates a major impediment to successful treatment.

With more clinical empathy around itching properly validating both patient pain and emotional suffering, alongside new treatments, there is every chance of sustained relief from both itching and its stigma. Patients will be willing to seek and able to maintain treatments, trusting that their itch will be taken seriously.

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