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The loss of one’s hair – sharing the lived experience of alopecia

I am inspired by a book created by Deeann Callis Graham that researches the world of Alopecia.

It's research through the experiences of women, men and children with Alopecia who bare their souls and reveal their fears, sadness, encounters of bullying and torment and eventually, their reluctant but necessary acceptance of the disease that took away their hair.

Alopecia is an autoimmune disease, in which the immune system attacks hair follicles as if they were the viruses and bacteria they are meant to destroy in order to protect the body.  The immune system becomes somewhat confused about its function which leads to hair loss in varying degrees from small patches, to the entire head and or body.  Many theories are presented as to why this occurs with so many varying factors and triggers and no conclusive determination except that ‘stress’ is always a part of the diagnosis.

The brave authors within Head On – Stories of Alopecia, have exposed their most emotional vulnerabilities for the purpose of benefiting others with Alopecia.  The majority of clients I see with Alopecia have never met another person with the disease, even more so in the case of my children clients.  I now ensure that I give a copy of this book to all children I fit for a wig, so in addition to them meeting me, they get to read the accounts of many others.  I hope that their exposure to me and this book reduces the isolation that people with Alopecia feel, typically going through life without sharing commonality of something so significant with others.

I admire the writers for their courage for what I would have once described for myself as revealing my weakness, my difference, my problem.  I never wanted to expose my Alopecia and did everything I could to hide it as a child, as a teenager and an adult.

As a child my ‘problem’ was revealed often in the school yard, as a five year old, my wig was torn from me by the big school bully and the back of my head was often a temptation by those curious and cruel.

Once one person knew, everyone else knew and that was who I became, – ‘Kojak’ is one of the ways in which they described me, others always wanted to feel, pull, prod, know more.  As a competitive swimmer, the questions were always about was I dying? Did I have cancer?  Because of course, one minute I would have a big pile of hair on my head, the next, my swimming cap hugged tightly my bald head.

If only I had the guts or know how to want to inform my peers publicly like one of my brave clients. Ashley had been cleverly covering her bald patches with caps and scarves for a while until she needed a wig for her school formal.  At this time she decided she would announce her Alopecia to her school and broader community to inform them about Alopecia so that they would better understand those with the disease.  In conjunction with her education campaign, Ashley also initiated a fundraiser for the Australia Alopecia Areata Foundation by receiving sponsorship for her to shave her remaining hair.  These initiatives were strongly supported by her school, local community and media.  Mature beyond her 15 years, wiser and more courageous than I could have ever dreamed of being – for her benefit and the benefit of all others with Alopecia.  She too had never met anyone with Alopecia and I hoped that by meeting me when buying her first wig, that I would assist in reducing any alienation or isolation that Ashley may have felt, particularly living in a regional town, and to know that others like her existed and coped well.  I gave her a copy of Head On in the hope that she would receive comfort from the stories told by many just like her and I.

“……Many years later I found out she was bald too and the hair she wore was   not her own.  Looking back, the bond we had that moment in the salon was     unbreakable…..I am crying, knowing what a world of difference it would have made to know that someone else looked like me and truly understood.       Strange as it sounds, it would be almost thirty more years before I would finally meet someone else who had alopecia.”  Deeann Callis Graham Head On – Stories of Alopecia.

When sharing my experience with Ashley and other children with Alopecia, I focus on the positives – the gains obtained through the experience.  For me they developed from having to overcome many obstacles, face many challenging situations, learn to deal with and from people in the way they treated me.

It made me a stronger adult, more compassionate and empathetic, driven by a desire to create change and right wrongs.  I tell the children they will learn skills that will enable them to be effective leaders in the future.

I have for 40 years experienced frustrating, sad and humiliating times in various wig shops with rude, and impatient sales staff, being sold inappropriate, unflattering wigs shoved in brown paper bags; made with an appalling lack of quality and sold by people taught to sell, not to care.

Spending most of my life denying my Alopecia, there became a time for me where I had to step up, and use my skills to provide a better option for those with Alopecia.  Regretfully I wasted an opportunity to become a public advocate for those with Alopecia when I was a Member of Parliament due to my reluctance to publicly disclose that I had the auto immune disease.  While advocating for just about every other cause or injustice over an eight year period, I denied myself and all others the perfect podium to educate and raise consciousness of a disease that affects 2.1% of the world’s population.

After a period of buying one wig after the other and even resorting to an online purchase of a wig that looked incredible and yet upon arriving on my front door step, miraculously became something very different, I took matters into my own hands – at the instigation of my husband who suggested that I could be the difference that I was seeking in the retail wig industry.  Well, that made sense – how else does one truly empathise with others without the lived experience?

We decided to right the wrongs that I had encountered for so long to provide true service – we created Tammy Lobato Wigs – specialising in the delivery of high quality empathetic service and the best, most realistic wigs available.  Clients appreciate the opportunity to discuss their Alopecia with their wig retailer who is perhaps the only other person they have met with Alopecia.  Others having Chemotherapy treatment or with hair thinning know that the person assisting them with their choice in wigs does it because she knows and cares.

By creating this service, I have finally publicly acknowledged my Alopecia to benefit others and begun to be an advocate in a small way that I hope will lead to healing some of the emotional turmoil experienced by people with hair loss.