FEATURE ARTICLE
My Alopecia, my story.
Hi everyone, I am Kirsty and I am a support group leader for AUK, in Inverness. We all have an individual story about our hair loss and I believe that it is important to share that story. Anyone that is going through a similar situation will realize that they are not alone.
Below is my story. Have you got your own story?
Before my alopecia.
My corkscrew ringlets cascading unmanageably over my shoulders were the antithesis of fashionable when I was a teenager. Put it this way, between the ages of 13 and 18, the closest I came to a romantic relationship was with L’Oréal’s curling mousse. I recall the first time my hairdresser used GHD straighteners 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!
Stylistically speaking, my curly mane peaked in the nursery when it occasionally allowed itself to be pliable enough to tease into cute pigtails of golden-brown loveliness. But, from then on, it slowly morphed into a pyramid of frizz that can only be described, Hagrid-esque.
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 I would have made a lifelong sacrifice of chocolate in my quest for straight hair in reality.
The start of my alopecia story.
A few months into my first term at university at 18 years old, I first noticed my hair falling out. I avoided visiting my GP for nine months, assigning it to a poor student diet and the stress of leaving home. When washing my hair in the shower, more and more strands were entangled in my fingers as I was lathering the shampoo 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. I didn’t suffer from fatigue, joint pain or kidney problems that often plague lupus patients. 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. 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.
I avoided bright lights lest they highlighted my shiny scalp and spent hours scrolling through tagged Facebook photos of nights out, ensuring that my bald patch couldn’t be seen. 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.
Hair loss anxiety.
Hair loss anxiety lives permanently in your subconsciousness. 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, well-intentioned but more appropriate for an Irish Dancing performance than for nipping to the shops.
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.
Wig wearing.
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!
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 because I believe the only way to remove the stigma around hair loss is to open up about it.
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. 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, how does she get that hair so shiny?
Hairloss stigma.
The bottom line is this: aged 20; it’s very, very difficult to come to terms with losing your hair. It isn’t easy 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 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 the personality. To lose hair is, to many people, a loss of self.
Society makes light of men losing their hair with age. Yet when it comes to female hair loss, nobody speaks about it, 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 permanently runny nose, scalp sensitivity.
Is my alopecia story over?
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 not to have to think about the hair logistics of going to the swimming pool.
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 and break down the stigma around 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.
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 not to 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.
What I need to say.
Over my years of living with alopecia, I have learned 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!
I’d love to hear and learn about your alopecia stories. Please upload your experience.
Kirsty x
Wow! I loved reading your story..I totally relate to you..you capture all the emotions so very well…I’ve struggled 40 years with my thin hair..and yes it took all my courage to get a wig..but why? I truly have never looked back since wearing one..I couldn’t go out without it on..wigs are amazing now..why didn’t I do this sooner? You look gorgeous in all yours, I would love to be part of helping get rid of stigma of wearing wigs..and I believe in admitting to some people..it’s a wig..I’m helping do that..I’ve never wanted sympathy..but I love the compliments…
Thanks again..
Thank you Kirsty! I was so inspired by your story that I went on to write my own. You have summed it all up so well and I can’t imagine how I would’ve coped if I’d lost my hair in my youth like you did. You look stunning and happy!
I’m so glad I’ve found all these stories .
Thank you for your comments and information It is very helpful to know one that one is not alone on this journey
Thank you ladies for your comments.It has been very supportive and encouraging reading the comments i
Very eloquent and well put!
Hi Kirsty – I so can relate to your story of hair loss – I lost my own hair at age 18 and as you say it is not a fatal disease but does have a massive impact on how you feel. I am now 60 and have learnt that it is just part of my life now. However it would be nice to see if there have been any further advances to the treatment as there does not seem to have been much research as to why this happens – I don’t believe it just happens – there must be a reason but nobody seems to be looking into that. Maybe one day they will but in the meantime keep looking fab in your lovely wigs. I do not live far from you and I come to Inverness to get my wigs. I live in Thurso
My hairloss started around the age of 40 when I was diagnosed with alopecia (I now recognise this as being frontal fibrosing alopecia but it wasn’t named as such at that time) plus telogen effluvium. For me it was a slow process and I have only recently started wearing wigs in my mid 60s but boy am I enjoying it! Really wish I’d started sooner – loving being able to choose a different style and shade whenever the mood takes me. I’m on my own personal mission to normalise wig wearing now. It’s simply ridiculous that in this day and age anyone should feel uncomfortable about sporting a beautiful head of faux hair!
What a lovely upbeat story of the effect Alopecia has had on your life. I have to say, you look fabulous in your different hairstyles, and none of them look at all ‘wiggy’.
Thank you for sharing your story.
So inspirational and positive Kirsty and You look lovely in all photos . So glad to join your Inverness group. We struggle daily on our emotional rollercoaster.
So well written Kirsty, everything you said was so spot on. Thank you
Kirsty’s story is so easy to relate to. When you have alopecia, like she said you lose your identity. Even more so when eyebrows & eyelashes follow on. Although you try to carry on as normal, every now & then a down day comes along but I think that’s normal fir anyone.
Well done Kirsty, for writing everything that we alopecia sufferers probably all relate to in many ways.
Wonderful young woman. I started losing hair in my sixties due to frontal fibrosing alopecia. I decided to get two very different wigs before it got too bad and let anyone who complimented my hair that it was a wig. I want to make it ok to wear a wig just like any other adornment.
Beautifully written Kirsty! You look beautiful too. I lost my hair at 13 so know exactly what you have gone through and are going through. In the 70’s chemotherapy was rare and hair loss was not well known. I had a terrible time at school but that’s another story. ?I’m 58 this year and happy being bald! My husband is amazing. I have accepted my alopecia, but I am very lucky to have kept my eyelashes for some reason.
When my friends are moaning about shaving and waxing and bad hair cuts and bad hair days I can sit there quite smugly in my lovely Reese wig and offer if they’d like to borrow one! Best wishes and thank you for sharing your story. Chrissy x
I enjoyed reading Kirsty’s experience of hair loss. It is very helpful to other people in a similar situation.
Wonderful story, you are a very beautiful lady and your wigs just look like your own hair. Thank you for sharing.
Such an inspiring story.. I, too, tell people I have no hair. They are always surprised (or very good actors!). I have a lupus related connective tissue disease which is even less understood than lupus (undifferentiated which means it can’t make its mind up). I admire your ability to cope with lupus, its side effects, steroids AND hair loss. My hair started falling out in my mid 40s and it took me several years to bite the bullet and get a wig after steroids made the situation worse. After a few duffers, I now love the fact that I can be out the door in minutes with a shake of a wig and a few bits of wig tape. I am now 65 and still look forward to a new wig. Good luck on your journey and thank you for sharing your story. BTW you look fabulous!
Well said. From devastation to positivity. I can relate thank you