Alopecia; leaning into my first big loss
A Growing from the Hard Places Blog
This sand tray shows elements of my journey with autoimmune disease. The wolf, the symbol of lupus, stands on a giant pill while the doctor of my childhood stands with bandages, a beating heart symbol, and a cauldron representing my experience of a medical trial. The concentric circles illustrate cycles of grief and the eel is a reminder to be flexible and flow with changing tides. The diver has a vantage point to see the whole story and the oxygen tank represents the resources needed to take that deep dive toward authenticity, self-compassion and healing.
I hold to the statement that none of us get through life without loss. Like everyone else I know, I have experienced repeated losses in my life. There were losses in my earliest of days: my uncle, later a doll and later still, friends I didn’t see any more after leaving my first primary school class. Yet, the first big loss I fully recall was of losing my hair as a child.
It has impacted most of my days since. No, all of my days since. It didn’t happen all at once. First, there was a single patch just above my hairline at the back. It wasn’t obvious, although it was fairly large considering my size at the time. The moment that first patch was found is ever present, sitting in my conscious awareness and ready to come forward. I was staying at a friend’s house and her mum was braiding my hair before the religious meeting I attended as a child. She did the most fabulous Dutch braids that would wrap around your head in a loop of precision, it was a treat to have her braid my hair. The look on her face when she found that first 50 pence sized patch has stayed with me, along with the gentle way she then carried on.
It fell, clump by clump. I would wake up and look down at the thick tangles of long hair on my pillow. I don’t recall a huge amount of distress, but as I go into my body and check out its experience, I can feel the tension start in the base of my spine and begin to rise. Then, the buzzing in my ribs. I can feel my breath begin to quicken. I didn’t know, and I barely showed it back then, but these were the first signs of panic. The first signs of the danger and fear I experienced when I saw my long locks laying free of my head.
At this early age, I was diagnosed with alopecia areata. It was my first autoimmune diagnosis and it felt serious. In most people this isn’t permanent and I knew my hair might grow back. Our next-door neighbour had lost her hair at some point and told the story of it growing back a different colour and texture. I would imagine mine coming back curly rather than straight, bright rather than streaky, and how everyone would notice me as changed, once again. This was a loss from my own body, permeating my identity, and yet it was in every interaction, in every relationship. For me, it was a social loss as well as a very personal physical and emotional experience. I went from being the cute blonde child people would gather onto their knee and felt truly adored, to a gaunt child with hair loss they could no longer quite look in the eye.
The reactions to my alopecia have varied greatly. There was a day in Cambridge shopping with my older sister that stands out in my mind, mainly because she was so protective of me and yet, there isn’t really such a thing as protecting a child from alopecia. If you have alopecia, the likelihood is that you are going to become highly attuned to the reactions of those around you. It can’t be avoided because you go from having hair to having difference in the way your hair appears, or doesn’t appear! It is like night and day; you know which phase you are in.
The shopping trip in Cambridge was a day I felt something really change in me. I can still feel the warmth of the bottle green jumbo cord coat that I loved and would still love to own if only I could find one. It’s funny how those sensory memories stick around from poignant moments. We walked out of a shop and my sister noticed an older man staring at me. I was somewhat used to this, but she wasn’t. It was an invasive stare, not curious, more like he couldn’t believe his eyes. My sister felt hurt, defensive and protective. I could feel it before she spoke. The rise in her spine before she told him to stop staring.
By this time, I had multiple large bald patches which were joining together. I felt a silent indignance at the ways people now looked at me and spoke about me. I’d been offered wigs and refused even to go and try them out. Instead, I’d become determined not to hide and was wearing my scraps of hair in a ponytail that showed my alopecia in all its glory. I didn’t look away from that man’s intrusive stare, instead I stared right back. This was when it changed, I no longer walked away from the looks, the comments, the questioning. I would stand and stare back. This was my autonomic nervous system in a sympathetic state, ready for ‘fight’ through this defensive, aggressive stance. You can explore these states of the autonomic nervous system in more depth by checking out polyvagal theory.
Not long before this, I had been walking away from these encounters. You might recognise this state as ‘flight’, the desire for active escape. Fight and flight are so closely related, when activated by danger signals, we often do one or the other. I remember a neighbour from further down our road, stopping me and my mum one day. She looked at me utterly appalled. As I walked away, I heard her loudly asking my mum why she’d done that to me. She had assumed that my mum had chosen to shave massive patches of my hair off in haphazard fashion leaving me with tiny scraps. In these moments, I knew that not only was the way I looked unacceptable to others, it was causing my family to be treated badly too.
When my parents decided to move to Scotland from Kent, I asked for the wig appointment. I didn’t want to deal with people’s reactions anymore and I didn’t want my family to either. Children’s wigs of 1990 can only be described as horrendous. The thick nylon lace caps caused eczema on my scalp. The hooks that changed the sizing would dig into my head causing discomfort and irritation. By now I had very little hair left and not long after the move, I asked for the remainder to be shaved off. I was just 10 years of age and alopecia had been a part of my life for under 3 years. It felt somewhat ceremonial as my dad held the clippers and gave me back my power. I chose this completion; I sought this action. For me, it was an empowering choice.
It was not long after this that my alopecia areata diagnosis was changed to alopecia totalis and then, to alopecia universalis. I no longer had eyebrows, eyelashes or any body hair. Thirty years on and my hair has never grown back. The comments have kept coming, from a comedian asking what I used to make my hair so shiny during a performance, to being stopped in the supermarket with my new-born son to be told it was such a shame that he would grow up without a mother – a comment that would not have been appropriate even if I did have a terminal diagnosis. People often approach me with their cancer stories attempting to empathise and wishing me well, but I have never been approached by someone living with alopecia. It seems we are a rare breed.
I share these early stories in an effort to demonstrate how hair loss can influence our ability to feel safe. I had pushed down the danger signals and ignored the fear losing my hair had created. I hadn’t processed them and yet by this time, I appeared unaffected by my alopecia beyond wearing a wig. The type of stories I’ve shared here often sent me further signals of danger, priming my autonomic nervous system for withdrawal, lethargy, sadness and shame. The drive to survive was stronger than the longing to connect and my system would shut down. In my early teens I was diagnosed with chronic fatigue syndrome. I cannot say if this was an effect of living with alopecia or just another illness in a list of many, but as a therapist looking back at my experiences, I can see safety cues existed within my home in relation to my illnesses, but rarely outside of it. I know this lack of safety activates a part of the autonomic nervous system (called the parasympathetic dorsal vagal) into protection mode, disconnecting and immobilising to conserve energy and resources. As a result, I missed most of my teen years to illness.
After over a decade of awful stock wigs, I asked for a better prescription. I had heard of Dermalite hairpieces which were bespoke, breathable and real hair. The base was made from a mould of the wearer’s head and were said to be ‘perfect’ for an active life. When I first requested this prescription, I was turned down and I refused to use my old prescription for about 2 years while I continued to write letters to the dermatologist. I believed that people with alopecia deserved better. Near the end of this time, I received a letter stating that I was not emotionally scarred enough by my alopecia to be given a Dermalite prescription. Soon afterwards, I received that prescription.
I strongly believe that if someone appears to be dealing with trauma or loss exactly as they dealt with life before it, they may still need just as much help as those who are visibly in shock, grieving or are acting out. People who are unaware of their trauma are less likely to be offered care and support. Being in a freeze state, or immobilised, is also a sign that we need to connect in safety and process our experiences, although these effects are so often ignored if it doesn’t cause issues or distress for others. Processing the different aspects of living with alopecia can bring healing, as can finding a sense of safety in the world through genuine connection.
Being able to feel safe with other people is probably the single most important aspect of mental health; safe connections are fundamental to meaningful and satisfying lives.
Through processing my grief and leaning into my experience of alopecia, I have found authenticity and freedom of expression. At times it has meant long blonde hair, vibrant red, purple, a pixie cut, being a skinhead with a floral dress, big boots and a leather jacket. Just the same as friends have changed their appearance, I have had that choice and I’ve enjoyed the playfulness of it. Many of the comments I’ve received, including around the assumption that alopecia would have a detrimental impact on dating, just haven’t borne out for me. The more I have leaned into my experience of alopecia, the less of an issue it has been in my life.
Recently, I’ve been seeing advice around appearing consistent when marketing my business and I wonder just how important that might or might not be. The advice goes that a counsellor should look in their marketing how they will appear on screen or in-person. Currently, I’m tending toward skinhead and at times wear a purple wig. Just like choosing between sandals and doc martens, it’s often weather related! ‘Leaning in’ means rolling with it, allowing myself to just show up… it doesn’t mean consistency in my appearance.
Alopecia has taken so much more than my hair from me and in doing so, it has also gifted me opportunity. It’s given me the push to develop this deep personal knowing, to figure out how to ride the waves, how to embrace my own authenticity and not fall into the traps of becoming too concerned over how others see me. With work, I have grounded myself in the knowledge that I can belong anywhere I choose. It hasn’t been an easy journey; it is by no means over and I will keep leaning in.