Recently I was walking home from work on a cold, dark, damp evening. I was wearing my coat with my hood pulled up. As I passed under streetlights, the shadow on the pavement in front of me reminded me of my former hairier self. The hood created a silhouette that looked like my pre-alopecia bobbed-hair. 

This year it will be 14 years since my locks disappeared. The 27-year-old who was completely overwhelmed, distraught, and baffled by her hair loss is long gone, replaced by a 40-year-old woman who, on very rare occasions, can still have a little wobble.

As I looked down at the pavement, I got that feeling in the pit of my stomach that I hate. A mixture of a little sadness and a pang of longing. 99% of the time I am fine, and have accepted my alopecia, living my life comfortably as a patchy-headed woman even though I often stand out like the proverbial sore thumb. Most of the time however, my hair loss doesn’t really factor into my thinking. 

And then there are those ‘1% times’ when I just feel like it’s not fair and I wonder how my life may, or may not, be different had my hair not fallen out.

It reminds me of how I don’t think I’m ever going to stop longing for my hair to grow back, which feels a bit at odds with my acceptance of my alopecia. How I wish there was a magic pill I could take that would give me my hair back. I’ve been thinking about this more and more in recent weeks.  

With new licensed treatments for severe alopecia areata (the JAK inhibitor treatments) there are pills that I can possibly explore. But they’re not magic pills. They come with the possibility of side effects, and the clinical trials show that if you need to stop taking them it’s likely any regrowth will fall out.  As I start to think more carefully about these things, I don’t think I want to take a medicine that might get me my hair back but could possibly have other health impacts, or might bring back hair that may fall out again. 

As any of my close friends and family will attest, my body is a medical marvel that has attracted the most weird and wonderful (and painful) medical problems in the past few years. I joke that my local hospital should have a ward named after me! The idea of pursuing a treatment that would require regular blood tests to monitor for side effects just isn't something I’m wanting to do (did I mention that doctors and nurses find it incredibly hard to extract blood from me?!). Not to mention how I would feel if I embarked on a treatment, got my hair back, and then had to come off that drug for some reason, and lose my hair again. 

After two spontaneous occasions of nearly full hair regrowth in the past decade, I can testify that hair loss doesn’t get any easier on the second or third time. If anything, it hurts more as it seems to me to be even more cruel to lose what you’ve so longed to return. I totally understand that others with will not the think the same as me and I wholeheartedly support anyone who wishes to try any new emerging treatments, and hope further options become available in the future.

On the rare occasion I have a ‘It’s not fair’ moment and wonder how my life might be different if my hair hadn’t fallen out, I choose to move to thoughts of how my life is better for having alopecia in it:

  • I have a fulfilling job in which I feel I make a difference in the world.
  • I have met some incredible people over the years who I would never have known if it wasn’t for my pesky misbehaving follicles.
  • I am more compassionate to the challenges that some people in society face, because of living with a visible difference for many years. 

(Please notice how none of these are the irritating ‘positive’ things that people have said to me over the years, such as how pleased I must be to save a fortune on shampoo – say this to me and expect an eye-roll in your direction..)

I would like to think that, to anyone that knows me, I am far more than that bald woman they know. I know my hair, or lack of it, doesn’t define me. Every person is more than what they have sprouting from their head, or not. But then it’s also interesting for me to reflect on how a shadow of my former self can wobble someone who, most of the time, is living confidently and happily with alopecia. 

We are all allowed an ‘It’s not fair’ moment, it’s how we move beyond them that is important. If the last 14 years living with alopecia have taught me anything, it’s that a future wobble is inevitable. But for now, I will try to spend more time looking up to the lights, and less time focusing on the shadows. Cheers to that!