Power of the bald – Power of me.

This is a struggle for power around accepting this path we are on, and indeed it is a path, not a curse, not a karmic debt or victimization that separates us from others. I see it all as an untying of the knots, a blessing and a valuable lesson on this journey.

We are all born and move through life tying ourselves in knots. Knots are formed through expectations; conditionings, beliefs and they form knots of fear, insecurity, difference and anxiety. We succumb to false identities and ways of being that leave us measuring ourselves against false images of what we should and shouldn’t be.

The moment we leave our mothers womb, we are seeking as human beings a need to belong in the world around us.

We seek acceptance from our mother and fathers.
We seek acceptance from teachers and work colleagues.
We seek acceptance from friends and community groups.
We seek confirmation from anywhere and everywhere outside of ourselves to prove we are enough.

But often we fail to look within, to resonate with ourselves as to who we are. The power that comes from acceptance is the hand that unties these knots that bind us to this fear and self-doubt.

Cutting these ties and existing just as we are and only as we are in each and every moment is where we find power to exist just as we are.Not measuring up or comparing, but being damn well enough, to ourselves most of all!

We find power in who we are by showing up vulnerable and not attached to societies normality. We find power in not following a belief in how we should look through social media and visual representations of the perfect woman or man.

We change our feeds, we look beyond the superficial and we stand proud for the difference we bring to the world. We reach a point of acceptance for that person we see in the mirror when all we have known has been stripped away? We choose, and we choose powerfully, to be all we are in this moment and this day and we keep choosing! For in choice and the choosing we create what is acceptable, what is beauty, what is feminine or masculine and what is enough.

You look beyond the pain; you look beyond the discomfort of what you see. You sit in a place of complete vulnerability and you find comfort in the discomfort.

You slowly untie the knots that have bound you to how you should look and who you should be and you keep unraveling those restrictive knots that limit you in accepting yourself just as you are. You remember with hair or without hair you will find faults or ways you aren’t acceptable because that’s what humans do!

It may be weight, it may be hair, and it may be the size of your thighs or the sound of your voice or the shape of your eyes or the colour of your skin or the choices in lifestyle or the preference of your sexuality. At any given time you have choice to choose who you are for all you are, and all you aren’t, just as you are! No excuses, no exceptions, it’s a damn choice we all have the power of making. It’s a human ability we all possess in any moment – To choose to love ourselves for all we are and all we aren’t.

So to all of my fellow Alopecian beauties, I choose being bald, I choose being different. I like walking into a room full of people and feeling like I am not like everyone else, it means I have a story unlike everyone else’s. It means I am unique and vulnerable and I am okay in the uncomfortable of that and sometimes I’m not and that’s okay too.

It means for the most part I accept who I am in each and every moment and sometimes I’m just faking it till I make it, but I am choosing all of this, every moment and it is there I find the power. It is there I gain strength every time I choose to love me, bald and beautiful and uniquely different.

It is there in that moment that I stand proud for all I am and all I am not, striving and growing and loving me. It is in this power I find strength to become a better human being on this journey to be open and compassionate for every other human being struggling with who they are in this world.

So power to the bald, power to the unique, we all shape the beautiful world that our differences exist within.

-Bianca

 

 

 

The Tropical Challenge – Beating the Heat while living with Alopecia

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

Later on in life when I was married and in my mid-twenties I moved back to the tropics. I lived in Papua New Guinea. My hair fell out again, this time it all went. At the same time I was a lot more confident and I had a husband who loved me no matter if I had hair or not. I decided that I would go wigless and instead wore colourful lightweight cotton scarves. They were a lot cooler on my head and my skin thanked me for it. No heat rashes, but I had to carry an umbrella with me where ever I went. Scarves to do not protect your skin from UV!

Ten years on and I now live in Cairns, once again in the tropics. I love the warmth and my sensitive eczema-prone skin adores the humidity that keeps my skin moist. My alopecia progressed to alopecia universalis and I lost my eyebrows and eyelashes. I got eyebrow and eyeliner tattoos and learnt to do my makeup so I feel comfortable with how my eyes are framed. After much counselling and inner healing I am so thankful that I can now go bald on the hottest days. I wear a wig when I want to and the scarves and hats come out if I feel like a bit of colour.

We all know that most of our body heat escapes through our heads so wearing something hot like a wig can be incredibly taxing when our bodies need to let off steam. Even wearing a hat can be very hot. On the other hand being able to take something off your head can be one of the quickest ways to cool down. So when the heat is a bit unbearable a cool cloth on my head or a quick dunk under the tap is amazing!

I’ve also learnt that my head is incredibly sensitive to heat. I try not to go out into the blazing sun too much or I end up with a horrific headache. So, I try and be mindful of where I stand when I’m outside making sure I’ve got more to shelter me than just something extra on my head.

Living in the tropics can be unbearable at times and not just for me in a wig, for everyone. Maybe I’m the lucky one who can take off my wig/hat/scarf and just cool down extra fast.

I watched a really great documentary that encouraged me, it’s called ‘Embrace’ by Taryn Brumfitt. It reminded me that we are all different and unique. Everyone has something that they are dealing with, something that they might not like about themselves. It’s not easy to deal but we are not alone.

Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons.

-Stef, AAAF Support Ambassador

 

The Key Information about Alopecia Areata

You know that moment when you think you’ve been coherent and then you realise all you’ve done is mumbled at the floor, yelled ALOPECIA and then looked at the other person expectantly? No, just me? Well, there are a few things we can do to avoid that ‘huh?!’ facial expression we get when nerves got the better of us. It’s all about getting the facts straight and doing a bit of preparation before you take the plunge. Here are some things to cover.

  • What is Alopecia?

Alopecia is a condition where your hair falls out. There are three main kinds: Alopecia Areata, which is where you get patches of hair loss on your head, Alopecia Totalis, where all the hair on the head falls out and Alopecia Universalis where you lose all your hair on your entire body, including your eyelashes and eyebrows. Hair loss is the only symptom. I have …

  • Is it contagious?

It is our hope to infect as many people as humanly possible so that the whole world will one day be egg heads like us Alopecians. KIDDING. You can yank their chain for a bit, but eventually tell them that they won’t be able to catch it from you.

  • What causes the hair to fall out?

Everyone has an army of soldiers in their bodies called the immune system. It’s supposed to protect us from nasty things like coughs and colds. Unfortunately, our immune systems are a bit overzealous and attack our hair as well. That’s why it falls out.

  • Is there a cure?

There is no cure and few treatments. However, there is this fabulous charity who is trying to change that, so you can head to their website and find out how you can help (hint, hint.)

  • Will it ever grow back?

We don’t know if our hair will ever grow back. Sometimes it does and sometimes it doesn’t. If the world is feeling particularly mean it can grow back and fall out many times.

 

Everyone is Different

There isn’t a foolproof ‘how to tell you friends formula.’ If there was, I would probably be selling it instead. Try a couple of different ways of doing it and see what works for you. You can reflect on your experiences by asking yourself these questions:

  • What went well?
  • What didn’t go as well?
  • What could I do differently so that what went wrong doesn’t happen next time?

You can do it one on one or just rip off the band-aid and do it in a group. Do whatever makes you feel the most comfortable. You’re already taking a massive step so you don’t need to make it harder for yourself by doing what you think is the ‘right’ thing to do.

I know it sucks, but you’ll probably get a variety of different reactions from people. Just recently someone thought me having Alopecia was wicked and that I looked stunning in my headscarf. Another looked at me and said ‘nahh not a fan of the ‘bandana thing’. I’ve found telling people an awesome way to filter out the good friends from the ones that give you grief down the track. I just want to make the really clear:

It should not matter to your friends that you don’t have hair.

The aim of being honest about your experiences is getting to a place where you can say to someone, ‘I’m going out in a headscarf today and I’m feeling really nervous’ or ‘I’m having a bad time right now and need your support.’  The worst thing in the world is feeling like you have to go through this alone. You don’t. There are people out there who will have your back. You’re awesome, and worthy of love and friendship.

The Telling Friends Toolbox

Here are the things I need when telling someone I have Alopecia.

  • A stable base of support so that there isn’t just one person supporting you (vital)
  • A plan of what you’re going to say so your nerves don’t get the better of you
  • A safe and neutral place to do it.
  • A good segue from normal conversation. I can’t even tell you the number of times I didn’t tell someone because I ‘hadn’t found the right moment’ in the conversation.
  • Make it clear that they can ask you questions and that you are more than happy to talk about it. I didn’t make that clear to one of my friends and she went about 5 months thinking that my wig was sewn onto my head. My bad.
  • You might have to bring it up a couple of times before friends are comfortable discussing Alopecia with you. I like to crack a joke about how boring it would be to be stuck with a hairstyle or how I never have bad hair days. Humour is a great way of lightening the mood.
  • A list of people you can call who know about your condition, just in case it doesn’t go well.
  • Create a little action plan of what you’ll do just in case the worst case scenario whizzing through your head actually happens. It’s could look a little something like this:
    • Call a friend or family member who knows about your condition so you can talk about it.
    • Do something nice for yourself. Watch that episode of Game of Thrones you’ve been saving. Read the book that’s been collecting dust on your bedside table. Do something which makes you feel good about yourself.
    • Reflect on what happened. Did you not give them the tool they needed to properly support you or are they a good person to have in your life?

You’re a badass

Now repeat after me: ‘I am a badass.’

And once more. ‘I am a badass.’

You got this covered, but just in case I’m going to give you one last tip to take away.

Be mindful of what your body is doing during these tough conversations. Your posture actually affects how confident and powerful you feel. Every time you want to hunch over and cross your arms say, ‘no!’ Square your shoulders, lift your chin and straighten your back – within reason of course. You don’t want to suddenly look like a drill sergeant.

That’s all from me, so be bold. Be bald. Be you.

Love, Alopecia

 

Highlights of 2016

Man. What a year.

On a global scale, it’s pretty well unanimous that 2016 has been hectic. Closer to home things have been pretty busy too, and this year has been a big one for the AAAF Team. So for the last post of 2016, we thought we’d look back on what we’ve achieved this year.

The Numbers Are In

This year, AAAF has provided 67 families with Wigs for Kids Grants to help them cover the costs of purchasing a wig. This program has been made possible by more than 2000 amazing hair donors who have supported the program in 2o16.

We’ve hosted well over 20 “official” events, with even more casual catch ups happening thanks to our amazing Support Groups (Find your local group here if you aren’t already hanging with this fantastic crew). We’re hoping to host event more events in 2017 and we’d love for you to be involved. Got an event idea? Email us at info@aaaf.org.au and we’ll help make it happen.

We reached a fantastic milestone during Alopecia Areata Awareness Week – our Facebook community has grown to over 3000! Our Facebook is one of the major channels we use to communicate the amazing things we have going on, so if you’re not already a friend, you’re missing out!

The Bald Canvas Initiative

This twelve month art project set out to raise spirits and awareness by creating beautiful artworks on the heads of people with Alopecia Areata. Over the course of this project we’ve held several events across the country. Check out some of the fantastic images below or check out the albums online.

 

Gaining Ground on Unfair GST

AAAF has been lobbying federal and state governments for over five years to discuss GST exemptions on wigs worn for medical purposes. In 2016, we took the campaign public with a peaceful demonstration in Melbourne’s Fed Square. Chel Campbell, AAAF President, shaved her hair in solidarity with those affected by this unfair taxation.

 

Sad Goodbyes, Warm Welcomes

In 2016 we also saw some changes to AAAF’s core Committee. Early in the year our long time Treasurer, Tracy left our group. More recently we have also said farewell to Vesna, who has stepped aside to spend more time with her growing family. Both of these extraordinary women have been part of AAAF’s journey since we took our first steps, and their contribution cannot be understated. Though they are no longer on our Committee, they will always be a part of the AAAF family.

This year also brought us our newest Committee Member, fantastic NSW Branch Manager Sarah.

If you’re looking to volunteer a few hours a week with a rewarding cause and amazing team, send us an email at info@aaaf.org.au . AAAF is always ready to welcome new additions to our group.

Big Plans

As fantastic as the last twelve months have been, we’re pumped and ready for what 2017 has in store. A number of big projects are already underway. For those adventurers out there, we have a team training hard to tackle the Kokoda Trail in August (Spots still available to join them! Email greg@aaaf.org.au for more details). We’re super keen to be joining our friends in the US of A for the National Alopecia Areata Conference in Miami, Florida! 2017 will be AAAF’s first year attending the conference and we cannot wait to bring back everything we learn and share it with you. Our tech team has also been hard at work this year polishing the insides of our screens, and we’ll have some very exciting web announcements coming in 2017, so stay tuned.

 

2016 has been a huge and amazing year and we are so grateful to have shared our joy and successes with all of you. All of this and more was only possible because of our AAAF team of donors, supporters, volunteers and families – so thank you!  We hope you all have wonderful holidays and are rested and ready for the fantastic New Year ahead.

Love, Alopecia

 

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.

gemma2