My Secret Brush with Alopecia

Yes, yes I am starting this blog post with a pun-tastic title name. No, I’m not sorry. Now let’s do this.

As you will see as I tell the full story, I got very lucky that the bout of alopecia I suffered in the summer of 2016 was (knock on wood) a one-off, very mild, and will hopefully not return. But from the moment it happened I had a very weird feeling that I would have to tell all of my readers and followers about it. Not necessarily because I wanted to, but because I felt with the following I have across my social media platforms that I should. That I owed it to people, not merely to be honest but more importantly to be open, to share something that is difficult and sensitive and not so typical. So here I am, much further on in time than I imagined this blog post would go up, telling you about that time I lost some of my hair and was fucking terrified by it.

It happened in June 2016, the day of the Brexit vote. I washed my hair that evening after voting and noticed my scalp was especially itchy as I was brushing my wet hair ready to set it. I brushed it longer and harder than usual to sort of scratch my scalp as relief, and because my hair has struggled to grow longer for the last couple of years and I had heard that stimulating the scalp helped encourage growth. At first I didn’t even notice what had happened.

I parted my hair, which is a side part on my right, and even sitting a few feet back from the mirror it looked like there was something in my hair. Kind of near the front. Was it fluff or something? I leaned in. Parted my hair to find the issue. It wasn’t a something, but a lack of something. A bald spot.

The bald sport

I hadn’t felt anything as I brushed my hair. No snagging or tangling. No pain, nothing. Only the relief from the itchy scalp, which I had been suffering with generally anyway, but that was it. But here, suddenly, where it had not been 20 minutes before, was a smooth, completely bald spot, just 2cm in from my hairline in the centre of my head, about the size of a 5p coin, but more oval than round.

I think at first I didn’t even really understand, I was so surprised. At some point I told my mum about it. I messaged my hairdresser on Facebook asking a bit frantically, yet sort of still calmly, if she knew of anything else it could be except Alopecia? I messaged my sister, who’s husband used to be a barber. Tension Alopecia, he said it could be, though that didn’t make sense with my hair routine because I just don’t put my hair under tight strain often, and certainly not in that spot.

I didn’t set my hair that night. I remember that I woke up to the news that the UK had voted to leave the EU, a vote I had not cast on my own ballot, that the Prime Minister was resigning in response. The tension was high. I cried as I texted my friend Giselle–amid freaked out realisations that what we were listening to on the radio and the TV was David Cameron abandoning the mess he had enabled–that ‘I found a bald spot in my hair G, it’s right near the front, and I’m freaking the fuck out.’

At 8.30am I phoned my doctor’s surgery as soon as they opened to ask for an appointment. The receptionist didn’t seem super alarmed that a 30 year old patient was reporting sudden hair loss, just arranged for a doctor to phone me later that morning. I expected an appointment so the phone call arrangement instead confused me. I didn’t get reliably phone signal at work on the mobile phone I had at the time, so I had to arrange for the call to come in on a workmate’s phone. I went to work, trying not to get too wound up about my hair and Brexit and the issues I was having simultaneously with a friend, but I started crying as soon as my manager came up to me and apologised for the out-of-line prank he had pulled the night before that had left me infuriated. He was aghast at my tears. ‘I’m really sorry Amy!’

‘No, it’s not that. This is nothing to do with you, but I’m probably just going to be crying on and off all day today, just a warning.’

The doctor’s call came mid-morning and the phone was brought to me. I wandered up the quiet end aisle of the warehouse, talking on someone else’s phone and trying to keep it together as I told the doctor what I had discovered. ‘And is this patch circular in shape?’ she asked me.

My stomach sank; I knew that so-specific question meant it was what it was and we both knew it. ‘Kind of. More of an oval, but yes.’

She said I had better come in for an appointment because it sounded like Alopecia. I went in within a few hours, I don’t remember the timing, but I sat there in a chair as a doctor told me, yes, that was Alopecia, as she checked the rest of my head for other patches (there weren’t any,) as she asked if I felt I was under any especial amount of stress lately, and I thought that Brexit and my friend issues surely couldn’t count, so I said no.

I was told it was probably an immune triggered episode then, that my immune system might be attacking my hair follicles and causing the hair loss, and that if that were the case they couldn’t really do much about it, doctors didn’t really know why it happened. They would run some blood tests to see what my body was doing anyway, give me steroid cream to apply to the patch, and warned me to expect more patches to possibly appear, but to try not to stress about it. We arranged for a follow-up appointment in a month to check if anything else had happened and I was sent to ask the receptionist to book a blood test. 

I went back to work, tried not to cry, and failed as I consequently thought about it so much my only member of staff working with me that day had to ask ‘Amy, are you okay? Is there anything I can do?’

‘No, no. It’s fine. I’m just worked up because I found a bald patch and the doctor said it’s Alopecia and I’m worried I’ll lose more hair, but I’m okay,’ I hiccuped, in that full-body trembling way you do when you’re so upset the sobs have hijacked your airways and your heart, your chest heaving with it in shudders.

Only 18 hours in and I was having to claim this new thing aloud to a co-worker, this happening that was occurring to (in?) my body. God, was I going to have to tell everybody? Would this small but badly placed bald patch spread just 2cm further and tell everybody for me, obvious at the dead centre of my hairline for everyone to see?

The blood test showed nothing unusual, which was good, apparently, but also nerve-racking because not getting a bad result can sometimes mean there just aren’t any answers. By the time my one month check up rolled around there were already tiny little hairs trying to sprout up in that small barren patch, with no other bald spots appearing, assuring me this episode might just be as brief and small as I kept hoping it was. Still, I was scared to jinx it, so I told only the people it naturally came up with in conversation.

But apart from not wanting to tempt fate by telling everybody something they didn’t really need to know, I also just didn’t want to tell them necessarily. It was stupid, and I knew it was stupid, and I had known it was stupid long before I had ever even had the tiniest of brushes with hair loss myself, but having this small patch of missing hair made me feel…almost ashamed somehow? As if it made me unfeminine, just that 2cm patch of shed hair no one could see unless I let them. I didn’t mind too much telling other omwne, but the idea of telling men felt odd and vulnerable and awkward.

As humans, but especially as women, our hair feels like such a huge, ingrained part of our identity that losing it without choice feels traumatic. I had known this for more than a decade, hearing talk of it from cancer sufferers and survivors. In the UK a popular 90s TV presenter Gail Porter had famously suffered alopecia at the height of her career and lost of all her hair. I knew that when women suffered hair loss they often felt less womanly because of it. This was all information I had known and felt sympathetic towards for years.

Really, I was only missing a small patch. What scared me most was where it was located, how easy it was for my hair to shift and show it, but I was cognizant of the fact that in the grand scheme of things it was almost nothing. Just a clump

And yet the shocking thing I learned was that not only was that small patch enough to make me feel embarrassed about the notion of having to tell people about it, but that of the maybe 10 women I told, 4 responded by telling me they had suffered hair loss from various sources themselves. One I had already known about, had tried my best to comfort her during the trauma of losing half of her hair in a serious health crisis a couple years before. Another had suffered alopecia too during a stressful time, but as we weren’t close I wouldn’t have expected a disclosure. But two other close friends revealed to me they had experience with hair loss, one short lived but severe, and the other ongoing, and neither had told me. At most I had told no more than two dozen people in total, most of them close friends and family, and yet 4 women in my life had experienced something similar and most of them had kept it a secret until I had fessed up first. 

And that’s when that feeling I had felt right at that first moment of discovery, that dread that I would lose all my hair and my vintage blog would have to become an Alopecia vintage girl blog automatically, that I would have to claim this thing I didn’t want and be known for it–that’s when that feeling solidified. I would have to speak out, write out, post up. I wasn’t sure when, scared as I was to jinx my regrowth so early on in the experience, but I would do it eventually, once I knew whether it was gone or now a permanent part of my life. Honestly, I meant to write about it before now, as I felt by last summer that I was ready to share, but the blog has been too busy with other content until now to schedule this in.

My regrowth in mid 2017

Now, a year and a half on, I’ve had no other episodes and my once briefly-bald patch now sports about 7 inches of hair. I can no longer easily find the hair that has regrown amongst the hair around it that was never affected. But even though my hair began to regrow on that patch almost immediately, visible in its attempts within a month, it wasn’t really until Christmas 2016 that I fully returned to setting my hair as I usually would. I still set my hair less than I did before the Alopecia, I don’t use the clip in hair extensions that I was using once or twice a week before the Alopecia, but otherwise I’ve returned to my norm. All except one thing. When it first happened and I was worried that more hair would fall out, even though I knew it made no sense, even though I knew it was futile–as I brushed my hair each day I did so carefully, holding my hair tight to my head at the roots with one hand while I brushed with the other. Scared to tug, scared to pull.

Even now, I still hold my hair as I brush. I still hold my hair.

And that brings us to the Why Now, and the How of it all. Why now? Logistically because I’ve given myself a bit of a clothing-review break since Christmas before the whirlwind of the SS18 releases begins and takes over my blog schedule again. But mostly because I’m not scared anymore, and I’ve got some free time to think and write. But the how? I do want to go over the how of the secret kept, for the women who are suffering something similar and worry themselves about how they will find a way to feel beautiful and put together when they can’t take for granted that their hair will always grow and heal and be.

I hated the things I had to do to cover my patch. Because of where it was, I was paranoid any further loss would leave me with a visible bald dent in the centre of my hairline, which would have made me feel awful. On workdays I switched from wearing a messy bun to leaving my hair down so that I didn’t put any strain on it with hair ties or clips, but I took one small section of hair from around my bald patch and pushed it up gently to form a slight lift at the roots, like a subtle little pomp. I secured it with a bobbypin. Every time I went to the loo over the course of my workday I checked in the mirror to make sure the grip was still in place, that the patch hadn’t become visible.

My social life and my blogging commitments didn’t cease, so instead of wetsetting my hair once or twice a week as I had done before, I stopped, leaving that only for special occasions once I was a month or more into the steady signs of regrowth. I wore my hair in a sleek bun. I tried to do poodle dos and pulled some of my hair down across my forehead as best I could to look like bangs so there was no chance my patch would show. I ordered Classy Rebel Bettie bangs in case the patch grew and I would need something to cover my hairline. Since they arrived way too dark and I had to get them treated by my hairdresser to get a decent colour match to my dyed-red hair, I didn’t end up having them in a usable condition for maybe two months. Still, it reassured me having them in case I needed them.

Classy Rebel Deluxe Bettie Bangs (Self dyed, review + info here)

I wore my hair in simple buns and used hair flowers to help distract and feel put together

I ordered a human hair lace front wig from Irresistible Me as well, thinking that if I did lose more hair down the line then by the time the wig was ready I would have it as a back-up plan. It took much longer to be dispatched than their FAQ’s claim so I didn’t get it for a couple months or more, but once again I was reassured knowing I had ordered it, as that was a small step I could take in preparing myself for something I would have no control over. By the time I received the wig my hair was slowly growing back and I felt like maybe I would be lucky enough not to need it, but I reasoned that at least it would come in handy for lazy hair days, which it does. (I use that wig now for most of my mid-week meet ups with friends to cut down on hair styling and to save time, but I was always waiting until I had time to write up this whole story before I disclosed when I was wearing the wig because I knew I would get questions that would inadvertently lead to the telling of this story.)

I kept blogging. For blog shoots I did poodles dos, even though I don’t like the way I look with them and if I don’t get them totally right then I feel ugly. But I didn’t really feel beautiful during that time anyway, because I didn’t feel I had control over what I could do with my hair to feel most comfortable and that frustrated me. It seems ridiculous, especially considering how much worse it could have been, but because of one very small patch of missing hair that was already regrowing, I didn’t feel all that beautiful anymore. Honestly, I felt insecure and a bit at sea.

All these pictures below? They were all taken when I didn’t feel beautiful, just because I couldn’t style my hair the way I wanted to. But when I look at them now I think I looked great. At the time I didn’t feel great, though. That is the intense connection we have with our hair and the importance we place on it, and it’s not crazy or over-dramatic to feel knocked sideways by an experience like that.

The Pretty Dress Company Thea review shoot

The Pretty Dress Company Hepburn review shoot

Playing the bride on a Confetti & Toast shoot

London Edge Sept 2016 with SodaFontaine, Blog shoot with my eldest niece, post-shoot with my then-youngest niece, and hanging with my friend Giselle

Deadly is the Female photoshoot, photography by Kevin Mitchell

These pictures were from the summer that my alopecia experience was fresh, pictures from collaborating with The Pretty Dress Company and Emily & Fin, from fun with my friends and family, from playing a bride for Confetti & Toast photography, from a modelling job for Deadly is the Female. Yes, a modelling job, when I wasn’t even feeling that great about myself.

I knew for a couple months in advance of the September shoot date that I would be modelling for Deadly is the Female, so my hair had already begun to regrow by the time I agreed, but for this particular shoot there were discussions about doing my own hair and makeup. As that wasn’t finalised early on, I kept mentally preparing myself for possibly having to let them know that I had a small patch of alopecia that wouldn’t show up on cameras, that was regrowing, but that I would feel most comfortable if we could avoid any hairstyle that required backcombing if possible, if it didn’t totally mess up what they had in mind for the H&MU look for the shoot.

I knew that if they did my hair and I had to tell them about all that, that they would be nothing but supportive and accommodating. As a team, they are kind, supportive and wonderful. And yet I worried about it a little because I still felt embarrassed about it in some way, and because I was being hired to model as a job, so as the client it was therefore their call how they wanted my hair done. If my alopecia meant they had to change their plans I would have felt terrible.

As I turned out, I did my own hair and makeup that day, so it was agreed I would wetset my hair and style it into my usual brushed out style that makes me feel the most comfortable. My best friend Giselle was modelling with me on that shoot, and surrounded by the lovely Deadly team I did feel beautiful that day, during a time that I felt really insecure and not quite myself. When I look at those pictures now I don’t remember that I had a tiny bald patch during the time we were taking them. I think about the amazing fun we had on that shoot, what a great weekend it was for G and I, and I think about how good I think I look in those pics. I wore approximately a billion wiggle dresses for that shoot (perhaps a rough estimate), something I don’t like to do generally; and even though the dresses were out of my comfort zone and there was a tiny patch on my scalp that was acting like an undernourished garden plot, I felt and looked bomb.

Modelling for Deadly is the Female in 2016, Photography by Kevin Mitchell

I’m guessing all of this is a surprise to you all, that you had no inkling from pictures or from anything I wrote or shared online at that time what was happening. I kept it a secret not because it’s in any way shameful, though I did feel vulnerable those first couple months, but just because I needed time to stop feeling scared about it. Sharing it with you now feels not-scary. It feels hopeful and perfectly okay, and I’m hoping by sharing it there might be some ladies out there who have experienced something like this who feel less defined by it or limited by it.

Yes, I know what I experienced was barely a scratch compared to losing huge clumps or all of ones hair, and I fully recognise that I got lucky with my episode. I just wanted to put it on record, here in my little corner of the Internet, that what I knew but didn’t feel really is the truth; you are not your hair. Not only your hair, anyway. It is scary and horrible and sad not to be in control of what it is doing, especially if it comes with sickness, but you are a wonder no matter what is happening to your scalp. If you identify as a woman, then you are still just as much a woman regardless of your hair length or density. If you’re a pinup, or a punk, or a trendy fashion goddess, that doesn’t change if you have to get creative with expressing it in new ways atop your head.

There might be days you feel absolutely horrible because of it, but you’re allowed to feel that way while also being assured that everyone else thinks you look amazing anyway. You are amazing. When our body does things we don’t want it to, it makes us feel a lot of things, some of them horrible and maybe even nonsensical–we might even know what we’re feeling is nonsensical–but that’s only natural and it’s allowed. I just wanted to remind you as I finish this post, in case you needed it, that you’re wonderful both in spite of and because of all you may be experiencing, and that there’s probably a lot of people experiencing the same thing as you without you knowing it. You’re not alone, and you rock. I hope today is a good day for you.

If you have any questions about my experience or about the products and hairstyles I used to combat it, please feel free to leave them in the comments or to email me at pinupamymay@gmail.com if you’d like to talk privately. 

All my love ❤

25 thoughts on “My Secret Brush with Alopecia

  1. I don’t have any overall hair loss but it’s gotten thinner around the hairline and makes me look like I have a big forehead. I don’t know if anyone else would notice but I do, especially in a photo. It makes me feel better. That’s why most of the time I use a clip in bang and occasionally a wig just for a quick change of style.

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    • Often other people don’t even notice the small changes we obsess over in the mirror! But I can see why you feel self-conscious of something like that as it’s a change to what you’re used to. Remember that it doesn’t change how awesome you are!

      Liked by 1 person

  2. Bravo, Amy! I cannot believe you went through such a scare! I would have been a wreck too – sure, it’s one patch and you never lost more but UGH how scary!! It counts! I appreciate you sharing this story. I think if other women have had similar, they’ll feel better knowing it happens and sometimes it’s nothing we did to cause it. Bodies are just so weird.

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    • Bodies aaaare weird! One of my best friends lost 70% of her hair from all over shedding due to a health problem a few years back and it was awful watching her struggle with her self-esteem as a result until it regrew. experiencing this minimal version of what she did made me realise how much worse it could have been, but I still wasn’t able to control that I felt upset by it. I got lucky, but plenty of others aren’t so lucky. Posting this has shown me just how common hair loss of various forms is and how little women talk about it, so I’m so, so glad to be able to help even just one person feel less alone in their own hair scare situations just by sharing.

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  3. Aside from your stunning outfits and makeup, you’re simply such a lovely person! Much respect to you for sharing this. Just today, I was speaking with someone at work about how many people go through something but would never know it’s sort of normal because nobody talks about it. Communication is so important in how we feel about something. Hopefully, this post will help others in similar situations realize that they are not alone.

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  4. Aa mentioned before, a lot of women struggle with alopecia. Myself including, I can’t walk out of the door without a wig. And I constantly have to tell people about it when people start to notice. And the most uncomfortable thing is that people don’t dare to ask but do want to know or look. I’m happy for you that it grew back, and I’m still wishing for mine too… but it grows back and goes again. One tip don’t ever worry about it, worry brings stress and that especially isn’t good 😉 and like you said, you, me and other women are not less female. Thanks! And keep on blogging 👏🏻

    Liked by 1 person

  5. We already chatted on IG…but thank you again for your honesty and for sharing! I have seen my daughter’s suffer with short bouts and also had my own very thick hair get very thin …never a bald spot, but it was scary all the same. I know you sharing will help so many

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    • It’s scary for everyone I think, our hair feels so precious and innately part of us that it messes with our head when we can’t control ways it changes! Thank you for your absolute kindness in response to this post, Ruby

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  6. *Hugs* I can only imagine how scary this must have been! I think it’s wonderful and so brave that you are talking about this now and sharing what happened to you, it will help other women feel less alone – and more able to talk about it themselves. It also raises awareness – I know it did for me, because I had never even heard of this condition before reading your post! Stay strong, Amy, sending you so much love.

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    • I’m lucky that I’m fine now and it was likely a stress episode after all, so I honestly don’t feel I have any right to claim it’s brave of me to talk about something I had mildly, briefly, and over a year and a half ago, when so many others deal with so much worse. But I am pleased that this post has helped some ladies feel less alone in their similar struggles, that’s exactly why I wanted to be open about it. Thank you for your lovely support ❤

      Liked by 1 person

  7. Thank you so much Amy. Actually made me cry with appreciation. I have lost so much hair in the past year at the front. I now have a questionable ‘Trump’ combover from the crown to the forehead!!!!! With a penchance for giant petticoats, I’m sure this raises some eyebrows at asda but it makes me happy and twirly. I baldly tell everyone about it (see what I did there, eh eh?). It’s becoming clear to me that it’s a problem for lots of women, yet no one speaks of it, so kudos to you for sharing your experiences. Nothing is as scary as not acknowledging an issue and feeling alone. When I saw you rocking betty bangs last year I thought something like that could be a solution for me, never guessing the fabulous Amy May was battling anything more than a boost of flamboyance! I’m so pleased for you that it grew back. I would love some recommendations, I have short dyed hair and a fangirlcrush on yooouuu! Thanks again for bringing this issue out in the open, once again you have surpassed yourself! Many kisses. Bring on the frocks for SS18!!!

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    • Thank you so much for such a lovely comment! I really just wanted to help other women feel less alone in their own battles so the response has been wonderful.

      I know it depends where your bald patch(es) are as to what hairstyles can be used to cover them, but if it’s a similar spot to mine then clip in Bettie bangs are definitely helpful, and bumper bangs and victory rolls can be cleverly placed to hide similar spots. Using eyeshadow the colour of your hair to colour in the spots can also help hide them more fully with hairstyles styled to cover the area.

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  8. I loved reading this post. Your reaction when you found out about your alopecia is the most relate-able I have read yet! I was very similar when I discovered mine, although mine kept coming and hasn’t quite buggered off yet. I have however found tons of vintage hairstyles that I can hide it with! PS. Adore your style!

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  9. I have alopecia areata and mine was really caused by a crazy relationship based stressed I put myself through. I had two patched and one was so large that I was sure I was going to look like fire marshall Bill from InLiving Color:/.. BUT I actually healed it and I am working on healing my second patch. I didn’t go to the Dr. because I was raised on natural medicine so I was like I got this!- but I am hearing from soon many people their tests come out fine. I think we women have so much tied up in our hair and I secretly wonder if by the time our hair starts to fall if that’s our body telling us PAY ATTENTION! Your fabulous and the good thing about Alopecia is it can actually remind you that even without your hair , you are still beautiful:) Love this post:)

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    • One of my friends who had alopecia with several bad patches didn’t seek medical treatment either and treated hers with certain oils. I think you’re probably right that our hair can act as a warning alarm that our body or our lives aren’t working well for us!

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  10. Pingback: Avoiding a Bad Hair Day: Wigs, Clip Ins & Turbans | Miss Amy May

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