A little bit about my alopecia…

If you've ever been through a bad breakup, you'll have an idea what it's like to loose your hair. You think you’re going to be together forever, attached at the hip (well, attached at the head) . You can’t even contemplate a life where you and your hair aren’t one and the same. Then, one day, everything falls apart  or more accurately…. everything falls out!

My alopecia experience went through five stages, similar to the stages featuring in every relationship blog since internet records began! Denial, anger, sadness, understanding, acceptance.  I realised this one day when one such article appeared on my Facebook news feed: "The Five Stages of a Break Up." I read the article for a bit of light entertainment, trying to beat the lockdown cabin fever and remind myself of pre-COVID-19 worries. I was not expecting the blog to resonate with me in the way that it did! If my hair had been my lover, my feelings toward it wouldn't have been much different.

A friend once advised me “the best way to get over a break up is to write a letter to your ex”.  You don’t send the letter, it’s more an exercise in catharsis. I decided to put her advise to use and wrote five short letters to my hair, one for each stage of our “breakup”.

Stage 1: Denial 

Dear Hair,

I thought we were meant to be together forever. It turns out you had a different idea. I should have guessed there was something going on years ago! From the time I was 16, mum would notice the odd bald spot on the back of my head, and then you completely disappeared at the sides! After a decade of such little infidelities, maybe I should have seen the alopecia totalis coming, but I never expected you would abandon me completely.

I don't really remember how you left. Looking back, there was probably a bit more of you in the comb, more of your curls in the plughole, but you never came out in clumps. It wasn’t like we see on TV, panic ridden women waking up to a mane of hair on their pillow. For along time, I put a headband on in the morning, pulled the remaining few strands of you over the back of my head and went to work. I thought if  I avoided the mirror, I could pretend you where still just as thick as always.

At some point, I had reached what most people would call “totally bald”,  but the image of myself in my head was still the girl with an afro. It was mum who brought me down to earth one when I was visiting home.

"You need to look."

She handed me a hand mirror and stood beside me until I held it up to see the back of my head. Oh hair, I knew you were getting thin, but I didn’t realise you were had gone so completely.

"Oh!" I said.

I put the mirror down and went about my day. That evening, I ordered a next day delivery of three different coloured chemotherapy hats. From then on, I rotated the hats to match the situation. Blue one to work, burgundy for shopping and cream when the others were in the wash. I knew you had left me but as long as the baldness was hidden, I could stick my head in the sand. It would be a long time before I would truly face up to my abandonment.

Original art by Shannon Guild

Stage 2: Anger

Dear Hair,

Just before Christmas, out of nowhere, your absence hit me like a rock. A hot, angry, molten rock freshly shot out of a volcano.

I was attending a weekly therapy appointment, unrelated to my skin or hair. A nurse whom I knew well spotted me in the waiting room and complimented my "very chique" hat. I smiled and thanked her, trying ignore the lava raging inside.

I wasn’t angry at my nurse (she was the loveliest person!) It took a while to work out the subject of my anger. I needed someone to blame for my distress and eventually, I found just the one. No prizes for guessing the answer…

…yes, I was angry at you. You left me and I paid the price! I was no longer good enough as if, without you, I had to be ashamed.  I didn’t want to be a “hat person.” Sounds ridiculous, right? I never minded hats when I had the option, but now I had to put one on just to make a cup of tea in front of my housemates! No one could know that you had left me.

I couldn’t pin all my anger on you. Once I’d started the blame game, I couldn’t stop myself. I soon had a hit list as long as my arm. The top three nominees:

• Roald Dahl: for his portrayal of bald women in the “Witches.” Maybe the stigma was already there, but he certainly didn’t help to describe bald women as “demon’s in human form.”
• Cancer: for claiming baldness as it’s own. People would pity me as if I was seriously ill. I didn’t deserve that kind of care. I felt like a moth stealing attention from a butterfly. 
• Myself: for being so ugly. I hated that, without you there to hide my scalp, everyone could see how bad my eczema was. My head was all dry and sore from scratching, not smooth like a baby’s bottom. I couldn’t even do bald right.

I went into complete, “The Bruce Banner turning incredible hulk” mode, just as green but with a little less hair.

Stage 3: Desperation 

Dear Hair,

At some point, maybe about a month after the day with the nurse, my anger fizzled out. I could never stay mad at you and I felt like I must have done something to drive you away. I had a history of an eating disorder and people were quick to jump on the poor nutrition as the cause. If that was the case then why did you wait until I was in recovery to fall out? One doctor put it down to stress and another suggested my eczema was to blame. I went over and over all the theories in my head, wishing I could know what I did wrong.

I decided I needed to do something to bring you back. My parents were a great support, ferrying me to appointments hours across the country so that I could have steroids injected in my head. I think mum missed you too, but was more realistic. When it became clear our efforts were in vain, she gently encouraged me to experiment with head ties and wigs.

In a weird twist of fate, my desperate pursuit for a cure came to a dramatic end when the country went into COVID-19 lockdown. Understandably hair loss treatment didn't fall into the urgent care category, so my treatment had to stop. I was forced to look at my hair loss in a different light.

Stage 4: Understanding

Dear Hair,

Instead of trying to cure my newfound baldness, I decided to understand it. Maybe if I knew why you left, I would feel better. I’ve studied immunology, so I knew alopecia was an autoimmune condition, but why would my immune system go on the attack now?

It had seemed cruel that my hair loss accelerated when I physically recovered from anorexia. Everyone always raves about how good nutrition makes your hair all thick and shiny, so I couldn't understand why you weren't happy? Alopecia isn't about poor nutrition! Hair requires a functioning immune system and when my body was starving, my immune system was weak. My theory is that perhaps a dampened immune system may have been behind the paradoxical remission in my allergies and eczema when I was underweight? I’ll never know for sure! Now my immune system is nourished, white blood cells are wreaking havoc in my body again. Thanks to their misguided attacks, my skin is itchier than ever and you’ve completely run away. Oh well, at least I can fight an infection!

Understanding why you left when you made me less disgruntled. You were under attack, what choice did you have? I’ve learned to cope with eczema and continuous allergic rhinitis - losing my hair is just another challenge from my over-excited immune system.

Stage 5: Acceptance

Dear Hair,

I will always miss you, but I need to accept you may never come back. You’ve moved on so what point is there dwelling on the past. Its time for me to embrace the bald. Hey, silver linings and all that - at least I save on shampoo!

I’ve used the COVID-19 lockdown to reinvent myself. I’ve started experimenting with new head coverings with mixed results: sometimes I look pretty sophisticated, other times I look like a confused gangster. I’ve also bitten the “wig bullet” and have a couple of different hair styles in my wardrobe. Today, I took my first trip out with a wig on (just to the supermarket but that’s a major outing these days). It wasn’t half as itchy as I thought it would be, courtesy of a bamboo wigcap, and no one stopped me in the aisle. Well actually, someone did stop me in the aisle but not to heckle me and call me out for being fake as I feared. I was walking the wrong way!

I’m getting used to living without you. I’ll never forget our time together. I look back with nostaligia at the days of “shampoo in the eyes” and “cornrow sessions”. So long hair, have a good life. I still got mine.

Shannon Guild

Find Shannon on Facebook or Linkedin.

Donate to research    More on alopecia areata  

By donating to skin disease research you are helping us to find treatments and cures for common conditions like eczema, acne and psoriasis through to potential killers like melanoma skin cancer. Thank you.