Alopecia & The Importance Of Connection

We have just finished our first Alopecia Friendship Group get together and I feel somewhat elated.

Since creating Tammy Lobato Wigs four years ago, I have heard my Alopecia clients tell me over and over how isolating having Alopecia is – that they don’t know anyone else with Alopecia – that they are sick of being told by  well-meaning family and friends that “It’s just hair”.

To be truly understood, people with Alopecia need to engage with others with Alopecia to benefit from shared experiences and potential know how from others living with similar circumstances.

The existence of hair is pretty much like having a nose or having ears – the overwhelming majority of people are born with them.  Our facial features along with our hair forms part of our identity.  It’s how we are often described by others – ‘she has long black hair’, or ‘you know, that woman in the office with a blonde bob.’

Alopecia can present itself by creating bald patches or complete baldness – rapidly or overtime.  Either way we become consumed with paranoia about who can see what and what they think if they know about our hair loss.  Not only are we worried about our hair loss and who is thinking what, we worry about the loss of eyelashes and eyebrows and whether we have drawn them on properly or are people looking at that as well.  We are worried also that suddenly our femininity has been eroded through the loss of our hair.

Our friends and family try to understand our fears and concerns but only a fellow Alopecian can truly understand.  We want the advice and guidance from others who know.

Most of my clients have never met anyone with Alopecia except for myself and most of the time they sound me out with questions about my eyebrows, eyelashes, what kind of make up I use, do I wear my wig to bed, wigs and dating! (Big question and often asked!)

Our first friendship group catch up – (next one November 17) – was fantastic – non stop conversation and actually all of us had difficulty winding up.

We started with introductions of course, that included information about our own Alopecia journey including how, when and how many treatments we had all tried.

Then we had a brainstorm session about the needs/gaps that existed for us with Alopecia.

Some identified were:

  • Easily accessible funding assistance for wigs – through private & public health
  • Unfairness of GST on wigs
  • Importance of make up
  • Greater and specific knowledge of Alopecia by GPs and Psychologists
  • Knowledge/information about Alopecia specific diet

In addition to meeting new friends, another highlight of the afternoon (no, it wasn’t the homemade lemon slices made by Tammy McPhee) it was our skype session with Author Deeann Graham from the US to learn all about her journey with Alopecia and her motivation for writing Head-On - Stories of Alopecia.  She also talked about her role now as a Life Coach for others with Alopecia - fascinating insight into how she is using her experience to help others.

Each month we’ll focus on a particular topic – our next meeting on November 17 will focus on make up – specifically eyebrows and eyelashes – just as important as good quality realistic wigs!

In future catch ups we will hear from guest speakers about (among many other topics) the role of our gut in Alopecia and its role in our healing (maybe for that one we will substitute the lemon slice, sandwiches and dips for some fruit & veg!)

Tammy x