Alopecia as a Fashion Statement

By Gemma

I know what you’re thinking, how can losing my hair (and in my case eyebrows and eyelashes) ever be considered a fashion statement? Young girls are constantly bombarded every day with pictures and videos of women with long flowing effortless-yet-this-actually-took-3hrs-and-20-products-to-do hair, and I could never imagine celebrities like Taylor Swift or Selena Gomez without their iconic hat-rack toppers. Having beautiful hair seems to be one of the biggest fashion accessories in Hollywood, and people without it tend to be looked down on. Hey, look how people talked about Britney Spears’ epic head shaving incident of 2007! Even men are told they must have perfect hair and growing up with my little brother; it seems they take longer than the girls to get their hair ready.

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So in a world where the ideal hair-do can be narrowed down to a handful styles, how does having no head hair compete with that? Well, at the risk of sounding cliché: 50% of the battle is deciding to not really give a damn any more. However, reaching that sense of freedom can take time and to be honest, is a complete emotional rollercoaster ride. I can safely say I went through the ordeal just as much as the next person, and as is the case in this technology-obsessed era; I have the selfies to prove it! Obviously the first step in the climb was to admit to myself that I was indeed losing my hair. That was hard, it sucked, and there were days I sat on the couch and cried with my mum. I soon realised that the situation called for headbands, scarves, and eventually wigs. When I first started I wasn’t very fashion forward with my head accessorising, and this was when I only had one bald-patch.

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When the second one formed I decided to name them Patch and Spot. Unexpected and unique names, I know. Once Spot reared his ugly head I knew that simple headbands weren’t going to cut it, so when my mum travelled overseas I asked her to buy me some pretty scarves. I watched video after video on Youtube and cancer support websites on the different ways to tie scarves, and I practiced and practiced in the privacy of my bedroom. After a while I started getting pretty good, and I learnt how to colour coordinate my scarf with my outfit, and most of the time my scarf added a little extra pizzazz to my day. I learnt to rock it.

A little later I decided to beat Alopecia to the punch and shave the rest of my hair off. This is around the time I started losing my eyebrows and eyelashes as well. This was another gut punch served by Alopecia in the battle, but my parents paid for a makeup lesson and I learnt how to draw them on and how to apply false eyelashes. When there was no hair left and drawing them on wasn’t really an option I found this fantastic website based in America which sold stick-on fake eyebrows. They were made of real human hair and were essentially wigs for my eyebrows – how cool is that? Of course I bought 2 pairs and wore them basically every single day. They stuck on with eyelash glue and after a couple of minutes I didn’t even feel that they were there. Coupled with my wigs, these few bits of hair glued to my face made me feel like no one was looking at me differently.

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Then the magical moment happened. When I was getting ready for my cousin’s engagement party I realised something – I was actually pretty lucky. Sure it sucked to lose my hair in the first place, but now that I had, I could essentially choose what I wanted to look like every single day. Blonde, brunette, intimidating and sexy biker chick – I had as many options as my imagination limited me to.

I stuck all the bits of hair to my face and donned my wig for the party; however I underestimated how hot the weather would be. It was too hot to wear my wig and after some internal panicking I decided to go without. The first time in months I was seen in public without anything completely covering my head, Patch and Spot were proudly on display and after some initial questions no one treated me any differently than anyone else at the party. I was amazed! Where was the pointing and laughing I had imagined? Where were the mean comments and rude remarks whispered behind my back? I could not believe it, I felt great and I actually had a completely incredible night.

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From then on I learnt to dress my skull up as little or as much as I wanted. I changed my look as often as I liked and I never once got a mean comment voiced within my earshot. I used my Alopecia as a fashion statement. Bald head and dark lipstick? You betcha! I was the shorter Australian version of Jessie J. I did it like it Ain’t Been Done because I embraced that Nobody’s Perfect and the world, well, It’s My Party. Jessie J references aside, I didn’t feel embarrassed to be headhair-less anymore; I used it to my advantage. As you can see from the extra pictures below, I can look like any way I like.

I completely understand that this article must sound like inspiration propaganda and that it can’t be true. I just want to show anyone who’s reading this that it is possible to feel good with Alopecia. Some days are going to feel dark and awful and you’ll sit on the couch and cry and eat a tub of ice cream, and that is completely ok. I did that more times than I can count. Do what you need to do to get through. One day it will feel easier and I promise you will reach the same place as me. Good luck!

What NOT to say to someone with Alopecia

gemmaHi, I’m Gemma. I’m 22 years old and I’m a registered nurse. I first lost my hair last year when I was 21 and working at a nursing home. I’d worked at this nursing home for 2 years already so I was well known by all the residents. However, I soon discovered that sometimes elderly people say whatever they want without really thinking about it, which, let’s face it, if I had lived a whole life censoring myself in society, I’d stop trying when I was old too.

One day I was having a particularly emotionally hard day at work, and I decided to write a response to every comment that had been said to me since I started losing my hair, and created this list of things not to say to someone with alopecia.

  1. “Oh but your hair was so pretty!”

Yes it was. Thank you for reminding me of the ghost of hairstyles past. My hair will be pretty if it grows back, and my face is still pretty even if it doesn’t.

  1. “But I liked your hair before”

Congratulations, so did I. I LOVED my hair; it was long and bright pink and oh so pretty. So you can believe my devastation when it started to fall out. You can also trust me when I tell you that I didn’t shave it off just to spite you, or to take it away from your liking. I shaved my hair off because it was falling out in clumps the size of my fingers.

  1. “You looked better with hair”

Gosh darnit people. I know I looked pretty with hair. Most people do. But I don’t look not-pretty now, I just look different. Get that through your skull before you comment on mine.

  1. “It must be good to lose your hair in some places though, right?”

While I understand some people think it would be great to not have to shave their underarms, bikini line or legs, I still have to do all of the above. Dudes, I still have to pluck my moustache and random beard hairs that pop up every now and then like some sick reminder that I just can’t keep hair where I actually want it to be. So no, unfortunately, I take just as long landscaping my body as you do.

  1. As one of my residents kindly said to me: “Come back when you have hair”.

Well that’s just rude.

  1. “Did you shave it off for cancer research?”

While I admire the people who do, apparently shaving your hair off to raise money for cancer isn’t as impressive if you don’t really have hair to begin with.

  1. “My friend lost her hair and she did (insert various medication/treatment/voodoo here) and her hair came back!”

Congratulations to your friend I have never met. Maybe they didn’t have Alopecia, maybe they didn’t have my kind of Alopecia, maybe their Alopecia behaved differently. Alopecia is different for every person and while I am very happy for your friend, I really don’t need you to tell me about it. I’ve researched every treatment under the sun; I know what my options are.

  1. “But it will grow back, right?”

Maybe, maybe not. No one knows and if I sit around and hide and wait for it to grow back my life will suck so much there won’t be any use for it to grow back. It’s just hair.

  1. “Boys don’t like bald girls”

Who gives a flying fart? Anybody who has a problem with me being bald is not worth my time.

  1. “Well you know you can get a wig or something”

Waaaaaayyyyy ahead of you. I have 2, and they’re beautiful. But they are also hot, sometimes itchy, sometimes give me a headache and sometimes just do not cooperate with the weather. So if I want to wear them, I will. If I don’t, I won’t. But I’m not going to wear them all the time just because you don’t like seeing my scalp. Everyone has one, mine is just on display.

  1. “It must be so quick for you to get ready now!”

If I don’t shower, choose an outfit, deodorize, put on make up or do anything else, maybe. I still do everything you do, except instead of just putting on makeup and brushing my hair I have to stick fake hair on different parts of my skull/ take longer doing my make up to mimic hair and fight with a wig that takes 2 days to dry once washed and takes a long time to style before wearing.

Also, I would happily trade my alleged half an hour of sleep in for my hair back, any day.

  1. Unless you are family or a really close friend, do not say any kind of bald joke.

I will punch you in your perfectly hairy face.

  1. “It must be so much cooler for you”.

Surprisingly no. I still get just as hot and I actually look more gross because I have no hair to hide my shiny sweaty bald head.

  1. “You’re so brave, I don’t think I could pull off the bald look”

It doesn’t count as bravery when it’s not a choice. My options were to deal with it or curl up into a ball and cry. While I occasionally do the latter, for the most part I chose the former.

  1. “I’m jealous, it must be so easy for you”

Your perfectly hairy face is in danger of getting punched again…

  1. “You look like a chemo patient”

Maybe I do. But why does that matter? Who says looking like a chemo patient is a bad thing? I can’t help it, and FYI, people who go through chemo are damn badasses. Chemo is sucky and horrible and I would be lucky to be half as strong as these people.

  1. “Aren’t you afraid you’ll look like a boy?”

My giant busty chest would make me a very weird looking boy, and my mannerisms, face, voice and waist all point to me being a girl. And again, why does it matter? If it really makes you so uncomfortable that I don’t look like a feminine damsel, you’re living in the wrong century.

  1. “Are you sure you don’t want to keep trying the treatments”

I have had conversations with people much more informed than you. I have researched, talked to others who have done the treatments and talked to doctors. I am an informed, mature, adult young lady capable of making my own decisions. And it’s really none of your business anyway.

  1. “Your parents must be sad that you’re losing your hair”

Yes my parents have had to come to terms with seeing a different looking daughter to what they imagined they would. But my parents are awesome. They are loving, respectful and supportive of me and I couldn’t ask for anything more from them.

 

So if you bump into me on the street and you’re at a loss of what to say, here are some handy hints:

  • If you’re going to comment on something I can’t fix in 5 seconds, don’t say it.
  • Compliments are great. Compliments never fail.
  • I can already see in your eyes what you think about how I look. Just make sure something nice comes out of your mouth.
  • If you can’t say something nice don’t say anything at all.

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Beyond Brows – A Guide to Universalis

Alopecia Areata is never a smooth ride, but for those living with total or near total hair loss to the whole body (called Alopecia Areata Universalis) the condition can have extra hurdles. The loss of brows and lashes can be a blow to self-image and greatly effect self-esteem and confidence. Fortunately, there are many guides out there for how to manage these appearance issues with through makeup.   But body hair has a range of functions beyond appearance, and many alopecians find themselves surprised and unprepared for the ways universalis can affect them.

Never fear, my friends. Love, Alopecia has got your back. Drawing on many years of experience managing the weird, wonderful and oft overlooked side effects of all over hairlessness, we’ve created this super convenient list to help you, whether you’re new to the AU experience or an experienced veteran.

*Featured image titled ‘Sue’, from Daniel Regan’s The Alopecia Project. View the collection here.

Hair on the Head

What’s it for?: So why do humans have so much more hair on their head than the rest of their body anyway? There are a lot of theories on the subject, but the most popular is heat regulation. You’ve probably heard the fact that humans loose most of their body heat through their heads. That’s not entirely true , but we do feel very sensitive to changes in temperature our heads and faces, hands, and feet. This is likely due to the concentration of nerves in these areas and the fact that they’re further away from the bulk of the body.

So hair on the head doesn’t do a lot to keep you warm, but surprisingly actually, it does a lot to keep you cool. Humans do a lot of their sweating via the head, because brains really don’t like overheating. Human hair takes part in this cooling system by being extremely absorbent which allows the person to sweat enough to keep their head cool on a hot day without constantly dripping.  Fun fact: human hair is so absorbent it’s sometimes even used to help clean up oil spills .

The final function of head hair is probably some UV protection. Back in the days when humans spent a lot of time outside, the tops of our heads would get a lot of direct sunlight. Though a full head of hair won’t protect you from sunburn, it can slow down the effects.

Universalis Guide:

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Instagram: sunsense_aus

If you’re going to get anywhere with AU, you’re going to need a beanie and a sunhat. Unless you live in the lovely warm north, in which case I recommend two sunhats. A full wide brim will give the best protection.

Sunscreen is also a must. Australia is the skin cancer world capital and just take my word for it that a sunburnt scalp is not fun. I find the best sunscreens for my head are ones designed for the face or under makeup, as these tend to be a bit lighter and don’t feel gluggy or oily. SPF 50+. You know how this works.

On hot days or when exercising there are a few things you can do to combat the sweat-tacular experience of lacking that wonderfully wicking head of hair. For wig wearers, I highly recommend keeping a packet of tissues on your person at all times. Some wigs can be worn while exercising but if you find it uncomfortable or overly warm, consider opting to for a hat or scarf or going au natural (if you’re inside). Scarves made from cotton or natural fibres like bamboo will breathe the best. I’m also a big supporter of sweatbands for AU gym junkies. It’s a bit 80’s, but it does stop you from dripping all over the yoga mat. You can find them in the tennis section of most sporting stores.

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Check out the fabulous @laurahathaway_alopeciafit for inspiration!

 

Lashes

What are they for?: Eyebrows primarily function is to aid communication so I’m not going to write much on them. Lashes however are a different story. The help shade your sun from your eyes, they keep sweat out of your eyes, and they help defend against particulates and dust. They also help your eyes stay moist by directing air currents away from your eyeball.

Universalis Guide: If you, like me, happen to have glasses as well as universalis, you are in luck my friend. Universalis can do a real number on the eyes, and the extra protection from a pair of specs can be a huge help. But no need to worry, my 20/20 visioned friends, there are other things that can help to.

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Summer essentials: Sunnies and a book.

Sunglasses are a good idea to reduce damage from glare, while looking snazzy at the same time. Eye drops and eye gels can also help to moisten dry eyes and shift grit or particulates which can cause damage to the surface of the eye. Always best to talk to your optometrist first about what kind of drops might work best for you.

When applying makeup, the lash-less should always take extra care. The particles and dust from powder makeup (like eyeshadow, pressed powder foundation or setting powders) can easily get into the eyes when you don’t have lashes. Even liquid makeup like foundation or eyeliner can get into the eyes without lashes as a barrier, even long after applying if the makeup shifts with sweating. Once again, eye drops can help rinse the eyes of these particulates, but discuss with your optometrist.

 

Nose hair

What’s it for?: Nose hair has got to be ranked Number 1 on list of things you don’t know what you got ‘til it’s gone. Much like eyelashes, its function is pretty much to keep out the things that should be out and keep in the things that should be in. Wait, things should be in my nose?

Yep, the reason we have a nose at all is to warm and moisten air before it gets to our lungs. The moistening part is done by a mucous membranes, and if you don’t have nose hairs to help keep that mucus where it’s meant to be, it’s, well, not so pretty. Your first head cold as member of the universalis family is very memorable. Bring tissues.

Universalis Guide:

All jokes aside, lacking nose hair puts people with universalis at greater risk of sinus infections, allergic rhinitis, colds and other airborn infections, and hay fever. There are some things you can do to help.

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Me, every pollen season. Source: Flickr

Sterile saline nasal sprays can be used regularly to help prevent particulates and allergens being inhaled. These are usually un-medicated (sterile saline being clean salt water) and can be used as much times as needed, which is particularly useful during pollen season or when you have a cold.

Medicated nasal sprays can help to alleviate severely runny noses, but use with caution. Many of these have very strict dosage limits, shouldn’t be used with certain other medications and can dry out the nose uncomfortably.

You may also find that your nose also feels very dry and may even bleed during hot months or after spending long periods of time in dry air conditioning. The saline nasal sprays may provide some relief, as will a humidifier. There are also nasal gels which can help, but again, try to find un-medicated ones if you can.

 

Ear hair

What’s it for?: Can you guess what ear hair does? That’s right! It does try to keep particulates and dust out of your ears! You’re good at this.

Universalis guide: Don’t use Q-tips! This goes for anyone, not just our AU family. Don’t stick things in your ears.

Ear wax exists for the same reason as ear hair – it keeps things out of your ear that shouldn’t be there. And it’s usually self-maintaining. Using Q-tips actually pushes wax further into your ear and can do some real damage to your hearing. If you feel like your ears are blocked or stuffy, go see your doctor. They can most likely help with ear drops or by syringing the wax.

Aren’t human bodies just super fun and not at all gross?

 

Arm pit hair:

What’s it for?: Like head hair, the function of having hair in arm pits is still being fairly hotly debated. Like head hair though, most people think the major purpose is to wick sweat and aid in ventilation.

Universalis Guide: I lost the hair on my head over a decade before I started losing it on my body, and let me tell you, the day my armpit hair finally abandoned ship was a celebration. Literally. I bought champagne.

However, as with so many parts of the universalis experience it wasn’t quite as simple as expected. As armpit hair is mainly for sweat wicking, you might find yourself needing more deodorant than usual. Popping a backup into your purse or workbag can be a good idea, and I especially recommend it in summer. Some people find that long acting stick or soft solid antiperspirants can help, but you may also find that the skin in your armpit is more sensitive than usual, especially if you’re also prone to eczema, and these long acting products can dry your skin. Look at buying sensitive or hypoallergenic versions and go for soap free body washes.

 

There you have it, my dear friends. While this isn’t a comprehensive guide by any means, we hope that it will cover some of the basics of flow on effects of AU that may not have come up in your dermatologist visits. If you have any great advice that we’ve missed in this column, or things you’d like to see us write about in the future, let us know in the comments.

Love, Alopecia.

“Courage was not the absence of fear, but the triumph over it.”

Hauling a tripod only marginally smaller than she was, my 5 foot nothing best friend struggled down the school corridor. A camera strap was clamped under one arm and a school bag over the other. She had two jobs for today: keeping me calm and filming my talk. Judging by her load, she intended to take her jobs very, very seriously. I stifled a grin.

We all waited in the bathrooms of the gym, four of my best friends and I.
The shuffle of unbuckled t-bars and the muted voices of my passing peers sounded more ominous than they normally did – like a brewing storm preparing to swallow me whole. They were probably filing into the year level meeting talking about the latest cat fights and boy drama or the stack of unfinished assignments piling up on our desks. Not for long though.

Apart from my friends, nobody knew I had Alopecia. Since getting my suction-based wig almost 5 years ago, I had hidden my condition from almost everyone. It was an exhausting way to live. So today, in front of all my peers and teachers, I was giving a 15-minute presentation about my hair loss journey.

The bathroom was too small to get any real pacing done, so I fidgeted in one corner, trying to shake the dread oozing through my body.

There were many things I was afraid of: people finding out I didn’t have hair, what they would say about me behind my back and once again being given the ‘bald girl’ label, like I had in primary school. What if my difference robbed me of a real place to belong? Worse still, what if people didn’t understand why my condition had been such a traumatic experience? After all, there are many illnesses which are worse than mine.

But I wasn’t the person I was pretending to be and that needed to change. There was a whole new Stef banging on the inside of my ribcage, desperate to get out and show the world who my condition had made me.

‘Okay Stef, it’s time for us to go up and join the others,’ my friend smiled. ‘Don’t worry, you’ll be great. We believe in you.’

‘Can you sit in the front row?’ I pleaded. They nodded and took turns hugging me.

As they filed out of the bathroom, fear went back to slobbering in my ear and putting its tongue in my thoughts.

I’d imagined this moment many times over the years- not me staring at grout in the bathrooms (that’s not exactly the stuff of fantasies), but using my experiences with Alopecia to help others.

For many years I had wished for my hair to grow back with every superstition I knew of, for the world to take away my difference. But 5 years on and I didn’t want this chapter of my life to end without it being published.

The funny thing was that I was in that bathroom with two opposing of fears. I was afraid that I wouldn’t be accepted as I was and I was afraid that I would spend my life pretending to be someone I wasn’t.

When it was time for me to enter that hall in my rainbow headscarf and ostentatious outfit, I threw open the double doors and smiled. Never before had I seen that many mouths pop open in surprise. It was like imagining the audience in their underwear, without having to suffer the indecency of doing so.

I told them how you’re never truly helpless because the one thing you can control is your perspective. I told them that normality is the biggest hoax in the history of the world and to embrace what made them a unique. Most of all I told them about a Stef that they had never been introduced to.

My friends sat in the front row, some with tears streaming down their faces.

When it was done, the whole room erupted in cheers, whistles and applause. Friend upon friend piled onto me in the biggest group hug I’d ever been a part of. They were crying. I was laughing. It is without a doubt, one of my most treasured memories.

Over the next week people stopped me in the corridor. Sometimes it was just to hug and thank me for sharing my story, sometimes they’d cry and sometimes I’d get to hear a small part of their journey. I needed to take a leap of faith to realise what an amazing group of people I was surrounded by. Fear has this way of filtering out the positives, until all that’s left are the ghastly ‘what ifs’.

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But the thing is, in order to turn a dream into a reality, we need a small amount of fear to motivate us. We need to be afraid of not getting the life we truly desire.
So what matters is not that we feel fear, but how we respond to it. Do we run and hide? Do we avoid everything that could cause us pain? Fear is a brick wall and once you break through it, you might find that what’s on the other side is so much better than you imagined it could be.

@stefhodgson
stef@aaaf.org.au

Welcome!

Welcome to Love, Alopecia!

If you’re here, you’re most likely one of the millions of people in the world who make up our alopecian community.

Perhaps someone in your family, maybe your child or partner or sibling, has joined the alopecian tribe.

Maybe you work with someone with alopecia, perhaps as a hairdresser or wigmaker or doctor or psychologist or teacher, and you want to know more about alopecia in order to help them the best you can.

Welcome.

Love, Alopecia is a place for all people who make up the alopecia community. If that sounds like you, you can keep up to date by following us for email updates, or by following AAAF on Facebook.

This is a place for the sharing of stories, information, advice and support. Our writers are all experts on alopecia – we’ve been living with it for years.

Stef has been a Support Ambassador with AAAF for several years. Stef has hosted numerous awareness talks at schools, conferences, and business events and has featured on TV and radio, all aimed at improving awareness of alopecia through education. She has had alopecia since she was six  years old.

Georgia (AKA George) is also Support Ambassador, in addition to her main role as the AAAF Secretary. Her background is in media and business, and has had alopecia for as long as she can remember.

Our other writers are, well, you. We have Guest Writers from within all different areas of the alopecia community. They may be blog writers already or may just have a single story to tell, but all are a vital part of what we do here.

Our philosophy is about approaching alopecia as an experience and as an identity, not as a disorder to be overcome. As well as discussing alopecia-specific experiences and advice, we focus on wider issues of image, identity and lifestyle. We’ll be posting articles, opinions and stories centred around the many ways AA affects our lives and impacts who we are.
This project has been proudly developed and supported by the Australia Alopecia Areata Foundation Inc.

If you’re looking for information about Alopecia Areata, how and why it occurs and how to manage the condition, click here to access the AAAF site. If you’re looking for support for people with Alopecia Areata within Australia, AAAF has state based support groups, Support Ambassadors and a variety of tools and resources you can access from here. For parents seeking resources for a child with alopecia, click here to access the AAAF Parents Support Page, which include links to our School Pack and Parents Brochure.

Please feel welcome to browse the site, chat with us in the comments and follow us to stay up to date. If you’re interest in writing for us, we’d love to hear from you! Please drop us a line at lovealopecia@gmail.com