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February 2014

The Stigma Enigma

stig路ma noun : a set of negative and often unfair beliefs that a society or group of people have about something enig路ma noun: someone or something that is difficult to understand or explain http://www.merriam-webster.com/dictionary/enigma


Alopecia Areata Support Association (Vic) Inc) support services since 1980

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

The Stigma Enigma If it’s ‘only hair’ what makes losing it so traumatic? Have you ever felt, or been encouraged to feel, that your distress in relation to your alopecia is excessive? Or worse still, have you felt there’s something wrong with you for being so upset, discouraged or distressed? Well in a new article some anthropologists working in health education have offered us something to think about which may be at least part of the explanation.

At some time, probably every person with alopecia has tried to cope with comments like “It’s only hair” or “Thank goodness you’re not really sick”, indeed we may say those same things to ourselves. But if such comments were helpful, why do we become so upset? Is it our ‘fault’? Is there something wrong with us?

A recent article, by Kathryn Coe and colleagues, about hair loss prompted by the experience of women with breast cancer, discusses a way of thinking about all this which may increase our understanding of unwelcome reactions to alopecia, our own and those of other people. The distress around hair loss may have an evolutionary basis and although Kathryn Coe and her colleagues focused on chemotherapy induced hair loss,

“......the evolutionary history of our species may offer us some clues as to why the loss of hair is so often and so widely reported as being traumatic”.

when you look in the mirror, baldness is baldness, hair loss is always devastating regardless of the cause, dermatological or chemotherapy-induced.

The authors looked across cultures at common responses to hair loss and developed some ideas about how these responses may have their beginnings in human evolution. Those responses include feelings of lost attractiveness, anxiety about looking ill and looking like a person who is dying. Women with cancer (as well as those with dermatological alopecia) feel a loss of privacy about their health, and can be ‘stigmatised’ that is, seen in a negative light. It seems our evolutionary ancestors learnt that those who avoided people who looked sick, were less likely to be sick themselves and to live longer and were then able to care for their offspring longer.

So this is the authors’ proposition “a fear response to the appearance of hair loss is ‘hardwired’ in our brains and not solely the consequence of what we personally have learnt through our experience in life”.

1 © 2014 Alopecia Areata Support Association. Permissions aasavic@gmail.com


Alopecia Areata Support Association (Vic) Inc) support services since 1980

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

Human hair and human evolution The author’s note that 2 physical distinctions, marked human evolution more than a million years ago, walking on two legs and the loss of most of our body hair. They suggest the loss of body hair is linked with the invention of clothing and the use of fire. Bodies covered in dense hair were no longer essential for survival, but we may have continued to have head hair because of its benefit in energy conservation. Much heat is lost through the scalp. However, human head hair keeps growing in length. Why? Other human hair does not and certainly animal hair does not. It seems it’s because human head hair follicles are partly controlled by a gene which makes them have a longer growing phase compared with, for example, leg hair. http://en.wikipedia.org/wiki/Human_evolution

The cultural impact of that gene was to give humans control over their hair, to shape it, and elaborate it in

various styles. The term “coiffure demanding genes” has been used and very few humans refuse to respond to that demand as all cultures cut it, shape it and elaborate on it. So, why would we humans want to attribute meaning to, and engage with our hair in the many and

“Continuous growth is the critical character giving

diverse ways we do?. Well, it’s close to the face and therefore important in recognising someone and it can be “read” for its information about ancestry.(eg. African, Asian or northern European

humans control of their

hair), it can indicate our age, perceived sexual attractiveness and

hair…..the interaction be-

state of health. Hair which indicates health problems may be ‘dry

tween biological evolution and cultural evolution is a likely major mover of the hominization process” (Thierry, 2005)

and lifeless’ and depigmented in cases of malnutrition. On the other hand, hair taken to indicate health is, lustrous, thick and manageable.

Hair and its styling, has relevance to social relationships too and this also probably has a long history in human culture. The ‘grooming’ of hair (or fur) is part of both human and animal behaviour. It is a highly personal behaviour in humans, even a preference for ‘unfussy hair’ is a hair style preference. And what’s more, there is an

aspect of bonding inherent is mutual hair grooming. A dermatologist recently commented he hadn’t realised how important hair was until he had a teenage daughter and he observed that she and her friends spent hours playing with each other’s hair. © 2014 Alopecia Areata Support Association. Permissions aasavic@gmail.com

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Alopecia Areata Support Association (Vic) Inc) support services since 1980

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

The emotional component of stigmatisation (negative beliefs about people) of any kind, may have evolved to help us avoid being exposed to diseases that could kill us. These emotions can include fear, disgust and revulsion.

Remembering that the article is about hair loss due to chemotherapy in women Coe and colleagues have recommendations which are just as applicable to women experiencing other forms of hair loss. They recommend that the preparation of patients and their family prior to hair loss is important, for family in particular as this may prevent them seeming non supportive. This includes preparing women for the intensity of their own response - to be emotionally and socially prepared needs more than factual information. However, explanations of the social and cultural influences on behaviour may assist in understanding why many people are uncomfortable with another’s alopecia. Fear of the sick is part an evolutionary, inherited response. The value of avoiding someone who looks ‘sick’ in our cultural history and its connections to automatic fear responses is a consequence of our evolution and it is therefore an important justifi-

“The importance of using the hair to communicate and the stigmatisation aimed at those who are experiencing hair loss, appear to be ancient products of our biological evolution and cultural history”.

cation for trying to modify this response.

Do we have a choice about being uncomfortable with illness or are we able to choose to be compassionate and supportive both to ourselves and others? Certainly we do have a choice, it may be more of a challenge to some people than others but Dan Gottlieb a psychologist who is a quadraplegic, has a message for those who look different as part of a condition, illness, or cancer treatment,

“People are hardwired to discriminate, but there’s a responsibility to teach a different way. It’s been thrust upon you”.

Another AASA hypothetical!

What can you say? Come to our next get together on Saturday 22nd February 2 pm and join us for a discussion about responding to difficult comments see page 5

3 © 2014 Alopecia Areata Support Association. Permissions aasavic@gmail.com


Alopecia Areata Support Association (Vic) Inc) support services since 1980

The Woman (or Venus) of Willendorf figurine Found in Austria in 1908 and dated to around 24,000-22,000 BCE.

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

Coe and colleagues note that figurines of women showing evidence of hair arrangements exist from the period between 30,000 and 10,000 years ago, and they conclude that hair although it might seem the most superficial part of the body, it has attached meanings derived from human culture. A contemporary braided hairstyle by Esra Erkut

from The Venus of Willendorf by Christopher L. C. E. Witcombe http://72.52.202.216/~fenderse/Venus.htm

“From the front, the place where her face should be seems to be largely concealed by what are generally described as rows of plaited hair wrapped around her head. Close examination, however, reveals that the rows are not one continuous spiral but are, in fact, composed in seven concentric horizontal bands that encircle the head, with two more half-bands below at the back of her neck. The topmost circle has the form of a rosette. The bands vary in width from front to back to sides, and also vary in size from each other. Cut across the groove separating each band at regular, closely-spaced intervals is a series of more or less lozenge-shaped deep vertical notches, some wide, others narrow, that extend equally into the band above and into the band below. These notches alternate between bands to produce the effect of braided or plaited hair. That it is intended to be understood as braided hair seems clear, although it has been suggested recently that the figure is in fact wearing a fiber-based woven hat or cap”.

braids_by_esra Esra Erkut braids_by_esra http://instagram.com/braids_by_esra http://www.youtube.com/channel/UCIAfPxCezJSuOhps4 fSBtPw

4 © 2014 Alopecia Areata Support Association. Permissions aasavic@gmail.com


Alopecia Areata Support Association (Vic) Inc) support services since 1980

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

Saturday February 22nd 2 - 4 pm at the Skin and Cancer Foundation (First Floor 80 Drummond St Carlton (Queensberry St corner) The AASA Interim Committee will be presenting our work updating the Association.

We would be delighted if you came along to discuss how AASA’s Aims and Objectives, public image (our name, logo, web page and facebook page) and our constitution, can all be improved to enable AASA to address the contemporary needs of people like you, with alopecia .

This discussion will form the basis for an important Special Meeting in May which will seek members’ support for changes in our constitution.

Followed by a hypothetical session!

WHAT CAN YOU SAY? Join us in an engaging conversation on dealing with challenging encounters! Don’t feel stigmatised! Be empowered!

5 © 2014 Alopecia Areata Support Association. Permissions aasavic@gmail.com


The Stigma Enigma Sources for the story

Coe, Kathryn, Staten Lisa, Rosales, Cecilia and Swanson, Marie (2013) The enigma of the stigma of hair loss: Why is cancer-treatment related alopecia so traumatic for women? The Open Cancer Journal, 6, 1-8

Christopher L. C. E. Witcombe, The Venus of Willendorf http://72.52.202.216/~fenderse/Venus.htm

Dan Gotlieb quoted in ‘Do I make you uncomfortable?’ By Rick Chillot Stigma? It’s evolution- http://www.psychologytoday.com/articles/2013/do-I-make-youary my dear uncomfortable Watson Thierry, B. Hair grows to be cut, Evolutionary Anthropology: Issues, News, and Reviews, Volume 14, Issue 1, p5, February 2005

Don’t forget to keep in touch especially if your email or home address changes, or you would like to volunteer for committee, or write for this newsletter AASA web page http://home.vicnet.net.au/~aasa (there will be a link to the new address when our updated page is ready) AASA Facebook page https://www.facebook.com/alopecia.areata.9 AASA email: aasavic@gmail.com AASA Helpline: 03 95138580

We meet on the last Saturday in the months of February, May, August and November

Alopecia Areata Support Association (Vic) Inc) support services since 1980

February 2014 PO Box 89 Camberwell 3124 Melbourne Australia Registration No. A 0017172Y Helpline: (03) 9513 8580 aasavic@gmail.com www.vicnet.net.au/~aasa

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Aasanewsletterfeb2014w  

AASA supports people with alopecia. We are located in Victoria Australia

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