“If I can prevent this from happening to any other little
girl...” That’s what I use to say in the
early years living with alopecia areata.
I hated this disease. It took away my identity as well as my hair. It
was my dark shameful little secret for so much of my life.
Needless to say a lot has changed over the course of nearly forty
years.
I was first diagnosed with alopecia areata when I was about
9 years old. Mom took me to our
dermatologist hoping to find out why I was losing my hair in patches. There wasn’t a lot of information back in the
eighties concerning alopecia and we left that day with a diagnosis of that I
was too stressed; that was why my hair was falling out and a bottle of Rogaine. After that I remember so many “helpful” tips
from family to not only to grow my hair but how to hide the bald spots. Mom did the best for me even with everyone
chiming in with their opinions. It was these helpful opinions that would haunt
me for years to come.
I was a shy child growing up, and school was tough as a
chubby kid. I played alone more often
than not. My younger brother had more
friends than I did. I did make school
friends but nothing that ever stuck into lasting relationships.
And when alopecia entered my life it made perfect sense to
keep those kids at bay. Especially when
the hair loss became extensive enough that wearing a wig was a necessity. That was a particularly difficult time. I finished the previous year of school with
thinning hair to the next semester with a full head of synthetic hair. I
remember one cruel day when walking the hall to my next class and someone
actually ripping off my wig, all the kids were laughing, pointing and calling
out “wiggy”. I had to bend down in the
hall to pick up my wig off the floor.
Thankfully I only wore that wig for one year. The fates would have it that my hair was to
grow back. I lived that alopecia period
as something that had happened. It was
in the past, a childhood thing that I moved on with. But it was not so; life is funny that way
sometimes. High school and my twenties
saw me hiding still; I would get a bald spot or two that I would cleverly hide
with hair styles. I always kept my hair
long just so I would have something to use to cover up spots as they came and
went. I still never talked about living
with alopecia; only family and the closest of friends would know about it.
I was still a shy person as I entered adulthood, never
wanting to get too close with people. I
still had a weight issue and had my own personal load of insecurities. There was a period of time when I turned 24
that I entered a really low period of depression and suicidal thoughts. It was just after my parents broke up for the
second time. They first divorced when I
was just a couple years old and I grew up not really knowing my father. After many years; when my brother and I were
teenagers; they tried a second time.
I was 23 when they
broke up, living on my own in my first apartment. My father had confronted me on the
breakup. I remember saying that I was ok
with it, I was an “adult”, and if this will make them happier then it was for
the best. I remember saying to him that
I don’t need my parents together to have a relationship with them. Sounds pretty grown up, doesn’t it?? But it was exactly how I felt. They gave it a try twice and it just wasn’t
meant to be.
Unfortunately that is not how my father saw it. He told me that if I wasn’t willing to put
them back together then I could “get the hell out of his life”. Those words still ring in my ears today after
so many years, and that was the last time we spoke.
With that I spiralled into a dark depression for a couple
years. Blessedly mom was always there,
she was my rock and with the help of a couple really close friends I slowly saw
the days brighter.
It was during this time that I was spending a lot of time at
a horse boarding facility and I connected with some wonderful people. People that shared the same love and passion
for horses, which I had for my own horse.
It was here that I made close friends that I trusted myself to lean on. I still have those friends today.
I still remember what that doctor had said when I was first
diagnosed, that I was too stressed. But that entire time of my depression I did
not lose any hair. I still had my
alopecia secret intact. So much for
stress causing my hair loss.
It was a few years later that my alopecia areata decided to
return to my life. I was in my later
twenties and I started noticing more hair in the bathtub drain and in my hair
brush. I was always so careful, checking
for any new spots, treating what came up. This time it was different.
Getting on the internet was easier as well at this time. I started researching alopecia for the first
time. I learnt that it was an autoimmune
disease, which funny enough apparently can be triggered by stress. I started finding support groups, and since
growing up with alopecia this was completely new to me. Up to this point I never knew another person
with this disease. All the years going
to the dermatologist to treat my alopecia; I never recognised another alopecian
there or saw any literature or support groups notices.
Statistically speaking approximately 2% of the world’s
population has a form of alopecia. I
also learned that there were different types of alopecia. Alopecia areata being
the type of bald spots on the scalp which I grew up having to the most extreme
version, alopecia universalis which is complete hair loss on the body and
scalp. This is what I now live with.
As my alopecia progressed I went to my doctors monthly, and
started aggressive treatments, mostly consisting of corticosteroid injections
to the scalp. During the worst of the
treatments I was getting close to 100 injections at a time. We also threw in
the occasional lotion, potion and any other treatment that would grow my hair
back. I felt like a human pincushion;
which also played on my mental health.
This is when I decided that if I could possibly prevent any
other child from going through what I went through with this disease then I was
going to do it. With the help of doctors
and the various support groups and actually speaking to others with alopecia, I
started to feel my voice and how I can help bring awareness to a disease that
is not often spoken about and holds so much shame.
I started with a Facebook page and adding my journey with alopecia
in blog posts. I stood in the middle of
the baseball diamond at a local game to speak about alopecia. I had articles written in local papers and
spoken on the radio. All in the name of
awareness. I wanted the world to know
that alopecia existed and not to have another child be scared. I was standing on my little soap box.
It wasn’t til I had other people come up to me sharing their
stories; stories that often times had nothing to do with alopecia, that
something changed in my narrative. I
found myself listening and empathising. I was growing and learning to see there was a much bigger
picture out there in the world.
We all have our own story, as different and as unique as we all
individually are. These journeys make up
who we are. We each deserve to share our
story, to have someone to hear us and understand. It’s more than sharing my alopecia story and bringing
awareness to this disease. It’s still
about how to help that little girl going through alopecia, but it’s not about
preventing it anymore.
Yes a cure one day would be fabulous! But until that day preventing is more about
sharing, not feeling alone, about connecting with a community that understands
what if feels like going through a difficult time. Whether that is alopecia, depression, cancer,
or anything else that this world throws at us.
To know that you are not alone; even if my story is different than
yours; we share a commonality in the struggle, the acceptance and the growth.
My journey into alopecia may have started with hiding and
then bringing awareness to this one topic but it has definitely grown into
something much larger. With living with this disease I learned how to tap into
an inner strength I didn’t know I possessed.
I still speak out and write. I
live openly bald and am still overweight; but now with no thought to what
others think. I have people come up to me asking did I shave for someone with
cancer but I also have them ask if it is alopecia. To me this is progress. I have moved to the other side of the world, I
have found love with a man that loves and supports me just the way I am. I have even recently been on podcasts to share my thoughts. My plans are on doing even more.
I know now today that
this is my purpose; to show and share with others. I listen with a compassionate heart with
others. I am grateful that this once
hated disease, this once shameful dark secret is no longer. And I am also grateful for what it has taught
me about the world and about myself.
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