News & Events Blogs Kirsty's Reflections on Hair Loss My hair was the bane of my teenaged life. The corkscrew ringlets cascading unmanageably over my shoulders were the antithesis of the fashionable, poker-straight styles donned by all the girls at school. Stylistically-speaking, my mane peaked in nursery when it occasionally allowed itself to be pliable enough to tease into cute pigtails of golden-brown loveliness. From then on, it slowly morphed into a pyramid of frizz that can only be described as Hagrid-esque. Between the ages of 13 and 18, the closest I came to a romantic relationship was with L’Oreal’s curling mousse. Strangers (always middle-aged women) would walk up and admire my hair. “You’re so lucky!” they would exclaim, “I always wanted curls like that!” I smiled politely, but in reality I would have made a lifelong sacrifice of chocolate in my quest for straight hair. I recall the first time my hairdresser used GHD straighteners in an effort to make my hair easier to cut; high on the endorphins of a good haircut, I kept it in that style for a whole week. I was complimented on how nice I looked with straight hair. How grown up I was sans curls. I finally fitted in. I noticed my hair falling out aged 18, a few months into my first term at university. Washing my hair in the shower, more and more strands were entangled in my fingers as I was lathering the shampoo. I assigned it to a poor student diet coupled with the stress of leaving home and avoided visiting my GP for nine months, until I reached a point where I was resorting to a constant side-parting to hide the thinness. I could no longer wear my hair down lest I unveiled the bald patch at the top of my crown. A barrage of tests concluded I had lupus, a poorly-understood autoimmune disease (aren’t they all?) whereby the body essentially attacks itself. My alopecia was attributed to this and as such I started medication. Yet my hair loss proceeded to worsen. The sense of a lack of control, of not knowing how bad this was going to get, was both frustrating and frightening. But hey, I thought, I don’t really have much to worry about in the grand scheme of things. I didn’t suffer from the fatigue, joint pain or kidney problems which often plague lupus patients. And so I just carried on styling my hair carefully to hide the thin bits, recruiting a small army of kirby-grips to secure strands in place. Avoided bright lights lest they highlighted my shiny scalp. Spent hours pouring over tagged Facebook photos of nights out, ensuring that my bald patch couldn’t be seen. You know the Fresh Prince of Bel Air theme song - the bit where his life got flipped, turned upside down? That was my May 2013. After a string of worrying blood results, I was diagnosed with autoimmune liver disease, too, and prescribed a heady mix of immunosuppressant drugs. Within weeks of starting a course of high-dose steroids, my already-thin hair began to fall out in chunks. I’d wake up each morning with a sinking feeling, knowing I would have to spend at least twenty minutes ensuring my hair looked presentable: a daily emotional battle fought before 9am. I’d inspect my pillow to count the number of strands that had detached themselves overnight, knowing that number just going to increase as the day went on. Hair loss anxiety lives permanently in your subconsciousness, rearing its head again and again throughout the day. I’d catch glimpses of myself in mirrors or shop windows, not immediately recognising the girl with a lank and greasy mane obtained through lack of washing, for fear of making more hair fall out. I’d walk past hairdressers, knowing full well I had never needed their skills more than now, but equally knowing I’d never have the guts to go in and expose my scalp to the entire salon’s audience. I’d browse Primark’s accessories section, admiring the headbands and scrunchies but never, ever buying them because attracting attention to my hair was unthinkable. My lovely mum would console me with soothing promises that “it’ll grow back when you’re off these drugs!” (I’ve never been off steroids since). She tirelessly researched ways to hasten regrowth, fed me avocados for vitamin E and bought fibres to shake into my hair to make it look thicker. She even sourced a curly wig online which was well-intentioned but more appropriate for an Irish Dancing performance than for nipping to the shops. The bottom line is this: aged 20, it’s very, very difficult to come to terms with losing your hair. It’s difficult at 30. At 40. At 80. There’s never a good time in one’s life to lose hair. It doesn't help that society places such a high esteem on our “crowning glory”. A thick head of hair is the currency of beauty, of youth. It’s not even a modern obsession: consider Jo March in Little Women, devastated after cutting off her hair and metaphorically selling off her femininity to raise funds for her family. Hair isn’t ‘just hair’. It’s an extension of personality. To lose hair is, to many people, a loss of self. Society makes light of men losing their hair with age. Society urges people to avoid “losing [their] hair” over stressful situations. Yet when it comes to female hair loss, everyone gets a bit… awkward. Nobody speaks about it, and yet it’s incredibly common and equally distressing. Why don’t we discuss it? Is it because to do so would be to admit that, despite our medically-advanced world, we still don’t have a ‘cure’ for alopecia? Is it because alopecia isn’t, from a physical perspective at least, fatal? We don’t even make headway in terms of discussing the additional, less obvious problems associated with alopecia - eye irritation through a lack of eyelashes, a permanent runny nose, scalp sensitivity… And then there’s the wigs. Over my years of wearing wigs, I get the sense that wigs are associated amongst the general population almost exclusively with cancer treatment. It’s accepted by society. Any kind of other hair loss, though… woah. Can’t compute. It takes guts to start wearing wigs. You are fighting that insidious inner voice, wittering away, telling you that anyone who looks at you for longer than a cursory glance must know your secret. There’s a vulnerability in that they are able to know something so intimate about you from a second’s glance, without even knowing you personally. (In reality, the likelihood is that the onlooker is probably absent-mindedly deciding what they need to pick up from Tesco. If they are noticing your hair, they’re probably thinking, jings, how does she get that hair so shiny?) Am I totally at peace with my alopecia? No. I have wobbly days. I don’t have the courage to leave my house without either a wig or a hat. I’d love to be able to not have to think about the hair logistics of going to the swimming pool. Am I at peace with wearing wigs? Yes, and no. When I first started wearing a clip-on topper, I didn’t tell my friends for two years (and, much to its credit, not one of them assumed it wasn’t real). Now, six years on, if somebody compliments one of my full-cap synthetics, I explain it’s fake. The reasons are dual-fold: I quite enjoy seeing people’s reactions, and also because I believe the only way we can start to remove the stigma around hair loss is to be open about it. Society needs to move towards an acceptance, or at least a greater awareness, of alopecia. We need to tackle our collective discomfort around people with no hair. We need to break down the stigma surrounding wigs. Credit where it’s due, the Kardashians have inadvertently normalised the use of hairpieces. We just need this to trickle down to the day-to-day public level. I have learned over my years of living with alopecia that a person’s worth extends far beyond their physical attributes. Some of the most inspiring women I have met are those running alopecia support groups and alopecia accounts on Instagram. They are strong, they are kind and they are beautiful. I am proud to be a part of their community. With every challenge in life comes a sense of confidence in one’s ability to deal with similar difficult situations in future. Would I prefer to not have alopecia? Probably. But would I exchange the life experience of the past ten years, the self-confidence it has ultimately provided, the opportunities to meet the lovely people I have met, for my head full of corkscrew curls again? Most definitely not. Kirsty is Alopecia UK's Inverness Support Group leader. You can find out more about her group here.