Losing your hair is bad enough, but watching it regrow and fall out time and time again is a whole new level of torture. It takes some serious endurance, patience and strength to live with Alopecia Areata but it doesn’t have to be a prison sentence.
What have I learned? Let go and get on with life. Stop thinking as if you’re sitting on death row, waiting for the whole lot to fall out. Those thoughts will surely seal your fate.
Alopecia Areata began for me in summer 2011. I distinctly remember finding a small round patch at the nape of my neck and cursing that I had developed yet another allergy to something. Maybe it’s that metal chain in the collar of the jacket I wear every day. So I cut it out with some scissors, convinced I’d found the culprit. No improvement of course. I moved on to using chemical free shampoos but the patch began to spread. What the ****. I showed a few friends but they shrugged, said it was nothing to worry about and it would probably grow back soon, maybe I was stressed. I had so much hair anyway it really wasn’t an issue; it was practically invisible unless I put my hair in a ponytail. Still, the patch continued to grow and that’s when dread and obsession set in. Thoughts soon become erratic.
WHAT IF I GO BALD ALL OVER?!
Is this karma?
I’m going to be so ugly!
What if it never grows back?
Do I have a serious illness?
I’m going to look like a cancer patient!
Maybe I actually have cancer?
What did I do to deserve this?!
You touch the patch every 5 minutes to see if any more has come out. Nothing comes away in your hand and you wonder how you’ve not found clumps of hair lying about all over the house. When did it fall out?! How could you not have noticed so much hair? The patch is cold and smooth, smoother than any part of your body because it doesn’t even have that furry downy hair. It is 100% bald. Touch again and you notice some tiny pinprick hairs. “YES! OMG it’s growing back!” you exclaim. But you’ve been fooled. Those tiny hairs that circle the outline of the patch aren’t regrowth; they’re the tell tale sign of Alopecia Areata – ‘exclamation point hair’.
Washing your hair starts to feel like a weigh-in at a fat farm. I bought sink strainer to catch the hair in the plughole as I couldn’t afford to deal with clogged drains but emptying it is more and more devastating each time. You pray there’s only a little bit of hair and that’ll be a sure sign that the falling has stopped. Instead you find half a dead cat. Sometimes I’d rub the fallen hair between some toilet paper to dry it. I was convinced that it looked worse wet and that if I dried it I could prove to myself that not much had really fallen out.
Next you have to blow dry it. Do I, don’t I? If I don’t my hair will be flat and I’ll look like I’ve lost a lot of hair. If I do, I’m potentially making the problem worse! What if I don’t do anything with my hair, will it grow back? Heat protector spray or no spray? You know the pros and cons of everything and it just makes your decision making worse! So you go through phases. A month of barely doing anything to your hair and then after seeing no results you end up styling it double the amount that you ever did just to keep it looking ‘normal’.
I became a starer. One of those girls on the train eyeing-up every other girl around me. That girl’s hair is incredible, so thick and luscious. Then you notice another woman in her 40s with male pattern balding, or somebody that is thinning on top. You notice the bald man, the balding man, the receding hairlines, the distressed hair, the over-dyed hair, the hair that needs a good trim, the hair that needs a brush, the hair that is barely there. Suddenly you’re an expert on everyone else’s hair care but you can’t seem to get a grip on your own! You swear to never treat your hair badly again. You promise the hair gods you’ll be a better person, just please PLEASE give me mine back! And you take this vow SO SO seriously.
Styling is a pain in the arse at the best of the times but when you’re half bald it is your nemesis. Mine has varied over time. Before AA I had a causal middle parting when I wore my hair down and when it was in a high ponytail I’d just scrape everything back with my hands, no fringe (bangs), just revealing a perfect hairline all round. This changed to a side parting if a patch developed on one side of my head. A bit pushed this way, a bit flipped over the other way. No more ponytails though, they revealed too much. Instead I opted for a low bun at the nape of my neck to keep the bald patch underneath hidden as well as drape the hair on top over the side patches. Even with my hair at its very worst this worked perfectly for me. The other option was the side plait. I had to keep my hair long to achieve this. But I got so sick of it. All I wanted to do with scrape it all back in a topknot and free my inner hippy. So when other girls started complaining that their hair just won’t style right I’d want to scream in their faces. BE GRATEFUL BITCH.
Enough of the ranting, that’s not who I am anymore. Back in March this year I reached a climatic point with my hair. I surrendered. Coping with AA was sucking the life out of me. I was living in a dark place inside of my head, feeling sorry for myself, hating my situation and feeling a bit like my youth, my exuberance and my existence in general was slipping away from me. Trying to hold my hair down over the patches on a windy day felt a bit like I was being pushed around the school playground. I couldn’t take it anymore. Trying to hide my baldness was exhausting.
For a long time I had been telling myself that I’d let go, that I wasn’t worried about going bald but I realised that all that time I had been kidding myself – I was still constantly thinking about alopecia! This truly became evident to me after watching youtube videos of other people suffering with AA; I broke down in tears. Their stories of going from patches to bald all over terrified me. My anxieties had been confirmed. Despite my upset I was so grateful to know I wasn’t alone and as a way of demonstrating this and contributing to the community I decided to post my own video. It changed my life and I haven’t looked back.
After revealing all of my bald patches with the world on youtube (the video currently stands at around 63,000 views – see here) I saw how ridiculous it was of me to desperately try hiding them everyday. If I could reveal all to the internet, what was stopping me in my day to day life? From then on I stopped holding my hair down in the wind, grooming my hair at work, touching it etc. I’d put my hair in a ponytail when around friends and suddenly I was so relaxed. So at peace that most of the time I forgot I had alopecia.
Before I would worry about going bald, now I could joke about it! I played about with my hair to see what I might look like bald and I genuinely laughed. I shrugged it off, if it happens, it happens! There’s so much worse in the world. More than just feeling ok about it within myself, I was actually telling people about my alopecia… and showing them! Talking about it makes it all feel okay and you realise that nobody thinks or sees you any differently. It’s nothing to be embarrassed about, it’s all circumstantial and it’s not who you are.
You know for sure that you’ve let go when you stop identifying yourself with your appearance. You actually experience being yourself. None of us can see our own eyes, mouth and nose without a mirror and finally I could no longer see my baldness. I was just Stella. Just as before AA. No more and no less. In fact no, there was one change, I became MORE confident. I was a fairly confident person before but the baldness had knocked me a little. Suddenly I was ruthlessly confident. I couldn’t give a damn. I’ve even cut down how often I wear make up. If you can’t accept me as I am, then you’re not worth knowing. It became so clear to me that you have to loose something that gives you a false sense of confidence to truly become confident.
Whilst I can admit it is much easier for me to write this now that my hair is growing back all over (thanks to the AIP diet), I’ve learnt not to get too carried away on a ‘high’. Life presents you with peaks and troughs, highs and lows. Knowing not to get over excited about regrowth is important when dealing with AA. If you get too excited and on an emotional high about regrowth it will make the next fall-out that much more devastating. We all know it falls faster than it grows back. I’ve had bald patches in various different areas all over my head. Some of these are now covered with a few inches of hair, some of the patches reoccur in the same place – particularly at the back of my head. My approach is to remain calm, detached and in the middle ground, feeling unaffected about regrowth or loss. I’m not saying don’t be happy! Of course regrowth is a wonderful thing and I feel positive about the state of my hair at the moment but by remaining in the middle, nothing can disappoint me. If it all falls out again I am prepared. I can be a confident baldy. I am a warrior not a worrier.
Watch this space! I will be posting a thorough page on the diet I am following (Autoimmune Paleo) which appears to have prompted my hair growth all over.
My video filmed back in March this year:
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