Decades of medical research underline what many women understand intuitively: hair loss, or alopecia, especially when the condition is permanent, can be devastating. A small proportion of cancer patients refuse treatment altogether, solely due to the threat of alopecia. But it’s not just that hair loss makes us look different, separating us from the people we were before cancer. As we’ll see, even when (and if) our hair grows back, we still feel, and perceive ourselves, as forever different.
Even Temporary Hair Loss Impacts Self-Image Forever
Cancer patients are almost always told that any hair loss caused by chemotherapy, along with the adverse effects alopecia can have on self-esteem and social relations, are temporary. But perhaps surprisingly, even when patients experience complete hair regrowth after undergoing chemotherapy, their sense of self-confidence rarely recovers in the same way.
In a 1997 study, published in the journal Supportive Care in Cancer, researchers gave 29 chemotherapy patients two widely-accepted tests to measure their self-confidence. One of the scales measured “self concept,” a term used in psychology to define the collection of unique beliefs we hold about ourselves, all of which come to provide an individual answer to the question, “Who am I?” The second scale measured each patient’s “body concept,” a narrower definition of self-image tied to one’s physical appearance.
All 29 patients had received a regimen including cisplatin, epirubicin and cyclophosphamide, which invariably induces complete alopecia, or full body hair loss.
Lower Self-Image, Impaired Problem Solving
Not surprisingly, the patients unanimously experienced decreases in self-esteem while undergoing chemotherapy. Hair loss also seemed to damage the patients’ perception of their own physical health and fitness, over and above the obvious impact having cancer, mainly ovarian cancer, would have on those two measures of psychological well-being. Losing hair made the patients feel sicker, or at least made the patients understand the reality of their disease more acutely.
But alopecia had another unexpected effect: the patients became worse at basic problem-solving. Hair loss, just as it influenced their self-perceptions, had a corollary effect on their cognitive, or rational, capabilities. Of course, there’s fairly strong evidence that cognition, or thinking, depends in part on one one’s own self-image. For example, people who view themselves not as isolated individuals, but as members of groups, like people raised in some non-Western cultures that insist on the fundamental interconnectedness of persons, tend to exhibit higher levels of empathy. In problem-solving tasks, these people who think in terms of “we,” rather than “me,” fail to generalize like Westerners do. Instead, their answers to basic problem-solving questions are almost always restricted to the specific context in which the question was asked.
Hair loss hurt the patients across all of these measures, self-esteem, perceptions of health and fitness and basic reasoning skills. But after chemotherapy, after their hair had grown back, most of the patients’ self-images did not “balance out” as you would expect. More than 73% of the patients felt less self-confident than they had before receiving treatment. Nearly half of the patients reported experiencing hair loss as “the most traumatic side effect of chemotherapy.” Such evidence suggests that while some hair loss may itself be temporary, alopecia’s psychological effects are almost always permanent.
Cancer In Public
For patients, hair loss can become a constant personal reminder of disease and the rigors of treatment. In one study, conducted by English researchers, a breast cancer patient described her own experience like this:
“Walking past mirrors – it’s that shock value when you’re not expecting something and you don’t want anything reminding you when you’re not expecting it.”
But unlike the internal effects brought on by chemo, symptoms like nausea and vomiting or a change in taste perception, alopecia is “out in the world,” for all to see. Many women come to perceive their alopecia as a “mark,” a visual label that says to others, “I have cancer.” This change can be all the more distressing in western countries, like the US, where the prevailing image of beauty is young and healthy, with a particular emphasis on hair.
Thus many patients, especially women, turn to wigs and scarves, techniques that psychologists have likened to camouflage. For some, however, these efforts to camouflage serve much the same function as would a bald head, marking them as “obvious” cancer patients. Even when camouflage does effectively conceal a patient’s condition from the outside world, the effort required to hide a hairless head can be so great, both practically and emotionally, that avoiding the perceived (and all too often real) stigma surrounding female baldness becomes no less a burden than hair loss itself.
Where physical appearance is interpreted as an indication of general health, hair loss is more than a loss of hair. It’s a loss of privacy. Prior to undergoing chemo, many women, including the 19 breast cancer patients interviewed for the study we mentioned above, fear being treated differently, based solely on their appearance. Those women were treated differently, and found themselves actively avoiding previously enjoyable activities in a search for anonymity. But anonymity can be hard to find, even with strangers, who routinely approached the 19 women with the express intent of discussing cancer. That isn’t just invasive; it’s tedious. Many of the women felt that they had been reduced, at least in the eyes of others, to their disease – and nothing more.
Compounding the problem, humans are wired by evolution to recognize faces first, and interpret most acutely the interpersonal information communicated through the faces of others. Hair, of course, frames the face, and research has shown that a person’s hair is encoded as a fundamental aspect of our memory of that person.
When Hair Loss Isn’t Temporary
Again and again, patients are reassured that, while hair loss may very well be “awkward,” it will also be temporary. That’s a “fact,” plain and simple, according to TheBreastCareSite, which states, “although it may take 6 months or more, the hair lost during chemotherapy will grow back.”
But what if that assurance, repeated by numerous sources including WebMD, the Mayo Clinic (“fortunately, most of the time hair loss from chemotherapy is temporary. You can expect to regrow your hair three to six months after your treatment ends”) and the American Cancer Society (“If you do lose your hair, it will almost always grow back after the treatments are over”) isn’t true? As hundreds of patients who received a single chemotherapy drug have learned, it might not be.
Today, Taxotere is one of the most common chemo drugs administered to breast cancer patients, both those with operable tumors and those with inoperable metastatic disease. It is a highly toxic chemotherapy agent, nearly double the toxicity of its close competitor, Taxol, a drug shown to be every bit as effective as Taxotere. But Taxotere may cause permanent hair loss in between 3% and 15% of patients. How do we know? Medical research stretching back a decade has identified numerous patients who received Taxotere, but never regrew their hair. After eliminating other possibilities, every one of these studies has concluded that Taxotere, not a zinc or iron deficiency, not other chemo agents or decreased hormone levels, is causing these patients to lose their hair forever.
Some of these women have even chosen to file lawsuits against the drug’s manufacturer, a French company called Sanofi, who they say has been hiding evidence of Taxotere’s link to permanent alopecia for years.