I am a 3rd generation alopecian…sounds exotic, doesn’t it? Here’s my story...
I first heard about Alopecia when I was about 8. The hairdresser pointed out to my mother that I had a bald spot under my hair, about the size of a 50 pence. It wasn’t a big deal….I was what you might call a Hairy Mary! My father’s daughter! My father had a full head of hair, like his father before him, right up until a traumatic event changed that for both of them. They both lost every hair on their body in a matter of days. My father was mid-50s when his Alopecia Areata turned to Universalis following a sudden shock, and my grandfather was much younger.
I’m going to be 41 next week. I have had Alopecia Universalis for 5 years. Prior to that, my Alopecia Areata was nothing but a small patch under a mane of annoyingly thick hair, or a silky smooth patch on an otherwise downy face or arm. I lost my eyebrows in 2002 at the age of 24….the aftermath of a stressful, abusive relationship. Those little caterpillars never grew back! I still miss them although I am eternally grateful to the inventor of semi-permanent make up!
There was no sudden shock or traumatic trigger for the onset of my total hairloss. In my case, I put it down to long-term stress and possible anaemia. My home life was tough and heavy, frequent periods had me running on empty. A patch on my head that started small, continued to get bigger and my eyelashes eventually began to fall like autumn leaves. This was summer 2014, and by November 2014 the rate at which the hair was shedding became so stressful that I asked my partner to shave it all off. Ask anyone with alopecia or someone who has undergone chemotherapy and they’ll probably tell you the same: the losing is far more upsetting than the loss! That overwhelming feeling of helplessness and panic as you wake to find your pillow amassed with hair.
Looking back, it was a strange old 6 months that followed the total hair loss. My 3 boys were 4, 6 and 8 at the time and I felt hugely conscious of the impact on them, but I needn’t have worried. Children are curious and questioning, but most of all, accepting to change as long as they are loved and reassured. There was much discussion about whether or not I’d be a “phony” and wear a wig. I didn’t, by the way, at least not initially. I found the stigma of wearing a wig horrifying, opting to tell everyone I met that I was bald under my horrible, itchy wool beanie hat.
I finally went to the doctor and they confirmed Alopecia Universalis. I queried my bloods being “normal” as I certainly didn’t feel normal. A further blood test showed my iron stores in my bones to be low even though my blood iron levels were fine. I guess I didn’t actively seek medical help or advice because it was hereditary. Here I was, a 3rd generation alopecian with my dad repeating his mantra at me, “Well, Emma, it’s not cancer!”
Absolutely, it’s not cancer, and that wee gem is still uttered in my head on the very rare low days, but that doesn’t mean people don’t assume I have cancer. The time my 6 yr old came home from school and said “mummy, someone said you’re going to die because you have cancer”, or that time at a gig in Glasgow where I publicly outed my shiny head for the first time, braving the sideward glances and the increasingly sympathetic hugs from complete strangers as more alcohol flowed. Even the passport control lady at Faro airport gave me a big thumbs up and a “well done” as she glanced from my bald passport photo to the luscious, auburn haired beauty standing before her!
So, here I am in 2019, 5 years living as a 'baldy bird'. What pearls of wisdom do I have for anyone experiencing hairloss? What positives have I taken from it all?
Firstly, TALK about it! Talking is taking control, it makes it real, and that applies to anything in life. We need to talk more, unburden ourselves from the things we can’t control.
CRY until you can’t cry anymore. Hair loss is a grieving process, it is not “just hair”. Those little hairs above your eyes, frame your face, those little hairs around your eyelids, they stop stuff going in your eyeballs umpteen times a day!
LAUGH. You’re going to need a sense of humour, so if you’re lacking, find one quick! Have fun with the new you staring back at you. Experiment with makeup and wigs and head scarves.
YOUTUBE is your new best friend! I don’t know how many days I lost to wig videos or eye makeup turorials in those early days. If you’re not on INSTAGRAM, get on it. There is a wonderful community of inspirational, beautiful, bald, brave souls on social media who will walk hand in hand with you through your journey. I am one of them!
TATTOOS, be they temporary or permanent, can be a great way to express yourself on your new blank canvas.
TAKE BACK CONTROL. Being bald does not define you, it just means there is less hair to pull out the plughole! Think of all that time you will save not having to shave or wax or style your hair. It’s ready to wear straight off the stand!! You are always beach ready! Go forth and be the envy of all those Hairy Marys hemorrhaging money on hair removal….bad hair days are a thing of the past!
Author credit: Emma Reid