How would you best explain Alopecia and what is Alopecia Universalis?

Alopecia is an autoimmune illness, whereby your bodies T cells are confused. The T cells over- protect the hair follicles, by covering them up all over and all around and actually thereby suffocating the hair follicles. At the same time the immune system believes that the hair roots are unhealthy and so “eats them up”. The body makes the roots and then they are not given a chance to grow into hair, as they are destroyed before they get a change to “sprout”.

Alopecia Universalis is a very rare illness. One in a million people have it. It means total loss of all body hair from top to toe. It is even rarer to witness a woman with Alopecia Universalis, as women usually hide it with fake eyelashes, fake eyebrows and wigs. I chose to be bald bright and beautiful and show who I am. Not the body, but I am the life that brings out the infinite glow and energy and spreads that light onto others. This is me - not the body.

As a result I feel that my body is beautiful, as I am making it shine and glow.

How and when did you discover your Alopecia?

I discovered it for the first time, during a pillow fight with my friend Vanessa. We were play fighting with a bunch of pillows and the goose feathers were flying around everywhere and we were laughing so much and just having a ball. Suddenly Vanessa tells me ; “Anouk, you have a bald spot!”. I placed my fingers on my left side of my head just above my ear and to my shock felt and found a bald spot on my head to the size of an egg.

What were your initial thoughts/feelings?

My first feelings were that of embarrassment. I was 9 years old and I had just started classical ballet in Copenhagen. Ballet dancers have their hair up in a bun and my first thoughts were all about “Oh how will I fit in” “Oh I do not want my friends to think I am a freak” “how am I going to be able to cover it up, whilst wearing a bun!”. “Why do I have a bald spot? My hair is so thick!”.

I felt confused and introverted. My attention was completely on my body and THAT bald spot and I had completely lost interest in the pillow fight game. Suddenly the room seems too small and too hot and I felt sad.

Were you afraid about the people around you finding out? How did they react?

As a kid, I covered the spot by pulling my other hair down. No one actually found out. I hid it well. But by me constantly hiding it, it somehow made me sadder. Not as happy at times and I wished to be normal like my friends who did not have bald spots. The funny thing is that the other kids always commented on how beautiful I was with my thick long blond hair and how amazing I was, as I was so good at classical ballet.

I guess I felt a bit like some sort of “beautiful sadness” and I really concentrated on ex- pressing this in my ballet performances. Before you know it I won the Ballet Dancer of the Year award and was awarded an apprenticeship to become a professional dancer.

Have you ever worn wigs or covered it up in a different way? Was/is it hard not to?

At first I got wigs made from real hair. They cost about GBP 2500 per piece! However, being the Dutch girl that I am, I found a way to get the wigs for free. I decided to be a model for a wig company in Almere, who made wigs for cancer patients and Alopecia patients.

In the beginning I had some boyfriends and then I suddenly lost all my hair in 6 weeks time. This was not exactly boosting my self-confidence. So this is when I covered it up with wigs and wigs with scarves. But I felt so hot, so fake, so uncomfortable...that the moment I got home...off went the wigs and the scarves and the makeup in a super hurry! I could breathe again and be myself within the walls of my own house (...)

(...) My boyfriends somehow got frightened by my look and the relationships did not last.

It was only when I personally decided that I was beautiful, that I stopped wearing the wigs. For many years I wore scarves. Going bald was still too much to handle.

It was a funny thing. When I was a teenager I was considered one of these stunning beach babe models with the big boobs and the super long thick blond hair with blue eyes etc etc..People looked and I got attention when I was young. I actually did not like it very much and wanted to just be able to blend in.

Now that I am bald, I somehow still get attention! Haha...and I still do not blend in!

Anyway, as the years passed, I got married to this amazing man, who loves ME for who I am!And me being bald or having hair makes no difference to him. He loves ME! This definitely boosted my self-confidence.

Another thing that really boosted my morale and ability to accept myself for being so different than the norm., was the attitude of my daughter; Iwana (who happens to also be my photographer on this shoot). She ALWAYS stood up for me, when people made fun of me and she always has told me that I am beautiful. This really warmed my heart and made me look at myself much more positive.

My husband and Iwana have always told me that I look amazing and cute and that I am beautiful just as I am. I realised that when I feel at ease about my body, then my attention is no longer on my body and my attention goes outwards to all the beauty in the world around me and the people and the living things in it and the things we do with one another. I am now at ease with being bald. I am that beauty within! I am unique. I truly feel that caring to make this world a more beautiful place, has at the same time, made me more beautiful too, by being able to put my attention off of myself and onto helping others.

I am happy and I am a super lucky Gal! I have a hubby who is one in a million and 2 wonderful daughters who are just so unique, amazing, talented and there are none like them in the entire universe. I love them to bits. I always considered myself very RICH. Not in material things, but because I am so happy and my life in fulfilled. Having hair or no hair makes no difference to one’s happiness (...)

(...)When one realizes who one really is and when one has a true purpose in life,then magic happens...one is beautiful !

Confidence is beauty. Love and admiration for others makes one beautiful.

What is one of the hardest things you have dealt with or experienced?

Actually, the hardest thing that I dealt with, was when I really liked this guy and just as I started dating him, my hair was falling out quite rapidly. So I covered it up with scarves and then the remaining hair would just hang down from the scarves and it kinda looked cool. Until one day when there was hardly any hair hanging down any more and he asked me to remove my scarf and show him my head. I was hesitant, but I did and showed him. He told me it was fine, but

I felt that he did not mean what he said. A few days later he ended our relationship. It all was going too fast, too intense and he needed some space. I knew it was because I was going bald and he could not handle this.

Other than physically, has it affected your social life?

Well it did in the past. Like I did not like to go to parties, as I always felt uncomfortable and hot from all the wigs and tight scarves or hats on my head. I couldn’t wait to get home, to take it all off.

But now it does not affect my social life at all! I go bald and I smile at the world and the funny thing is...the world smiles back at me!

I now get asked the funniest things; Are you a model? Are you a Buddhist? Is this the styling fad? Wow you look hot!. Some ask if I just had cancer, but then are so amazed that I am glowing so much of health. Others simply tell me that I look stunning.

Have people treated you differently because of your condition?

Children especially. Like just recently I met these 2 adorable kids of around 3 and 7. At first they looked at me and were a bit scared. I asked for their name, but they did not answer. But after a few moments of me just being me and cheerful and such, they warmed to me. And now...2 days later, they literally run up to me to hang onto my legs or tell me things or show me things or ask if they can come with me.

Kids like to touch my head. They ask questions “why you got no hair?” and then they wanna feel it.Once they felt it and their questions are answered, then that’s that.

Babies have always loved me. They smile and show high interest in this person that looks so like them and can talk and walk!

In shops, some people tend to sympathise with me and tell me in soft words, “How are you doing?” ‘Just wanna tell you that I went through this too and it will all be okay”. “Or I get special treatment or free drinks or food sometimes”.

What I do find silly, is that at parties when there is a photographer, they often avoid me. So their photos somehow just do not include me. This is when the photographer is asked to shoot at a party for promotional purposes. I hope that in the future, people can just accept anybody for how they look and that it will not matter how you look or dress to get a job. What matters is your personality and your skills and attitude. Not your body. Not your clothes. A world where all cultures, all races, all ethnics, all colors, all body types, all fashions are accepted is to me a sane world and where emphasis is placed on a person’s actions, skills and personality traits.

What have you learned about yourself through your experience?

That I am not my body. I am that life unit within and around my body. I create life and beauty and when I realised this, I no longer had attention on my body. I make my body beautiful, through admiration for myself and others. Now my life purpose is on making the world around me a more beautiful place. With this I do not mean necessarily material things, but the energy that all living things create and so with that beautiful material things ensue too from it.

Art is beauty. Art is what brings ideas into reality. Creativity is what makes people beautiful inside and out. Love is the universal solvent to end all that is ugly. If I am love, then I am beauty. To concentrate on making this world a more beautiful place for everybody, it creates magic, in that it evaporates hate and ugliness and greed and things turn into positive vibes and creativity. This is what I learnt from my experience.

How has Alopecia changed you for the better?

I would not necessarily say that Alopecia changed me for the better. I feel that what changed me for the better, were my life experiences. Being able to stand up, after falling down and learning from my mistakes, becoming a better person and being able to step into the future with a brighter and stronger outlook on life.

I have been through many adventures in my 51 years, travelled and worked in over 150 countries, seen and worked with all manner of man and so gained a lot of wisdom through the study of life. Why am I here? Who am I? What is my purpose in life? What makes me happy? Getting answers to these things has changed me for the better and really changing my life from being very self concerned because I was bald, to someone who was no longer self centred, but with my attention and intention towards helping others and making this world a more beautiful and happy place for all is what really changed me for the better. Now I wake up with a smile on my face and an excitement for the new day! Every day is a brand new day to be filled, in whatever fashion I decide to fill it! Isn’t life just exciting! 

How do you define beauty? Has your definition of beauty changed since you got Alopecia?

Women are the beauty of mankind.

Beauty is decency, kindness, love, admiration, care, understanding, willingness to help another,honor, integrity, confidence in oneself and doing something creative, artistic every day. Beauty is interest in the world and others.

What is something that you wish people better understood about Alopecia?

That it is not cancer. That it does not mean that you are weak or sick. You just ain’t got no hair! That’s all!

What is one thing you would say to another women dealing with Alopecia?

You are so much more then your hair! Look outside yourself. There is a whole wide world out there to explore. Live your life to the fullest and have fun! Dare to be different! Be bold, brave and beautiful!

Is there anything I haven’t asked you about you and your alopecia that you still want to say?

I kinda feel I told you all. But let’s see... I think that the main thing I did not say yet, is the fact that I notice how much attention other people have on me being bald and that it makes them feel sad or uneasy or it reminds them of someone they lost with cancer...Also it is sad how many people are worried that I am sad or unhappy because I do not have any hair. Also when I read about other people that have cancer, it seems that often the biggest issue is the fact that they lost their hair (...) 

(...)and not the fact that they actually have cancer! When I was a model for the wigs, I met several cancer patients that were so sad about losing their hair and this was more saddening to them, then the fact that they could lose their life! It made no sense to me. And when I read articles of people that have lost their hair through Alopecia, then it is mainly about their sadness and introversion and uncomfortable with being bald. This is what I feel really needs to be changed in the way society looks at people. People look, judge and have emotions because of how they or other’s bodies look like. If their bodies do not conform to the norm, then something is amiss and there is way too much energy put on this....”I am too fat, to white, to black, too spotty,too red haired, too skinny, too tall, too short, too many freckles, too little freckles, I must have curls, I want straight hair, I hate my brown eyes, I want green eyes, why is my face so lopsided, I got too much body hair, I got no body hair, etc, etc...” This is what society is pushing. This insane need for PERFECTION. With plastic surgery, beauty parlors, Instagram pictures and the media.But the emphasis is all wrong...Beauty is NOT one’s body...Beauty comes from within and from your actions and your personality and what you do in the world to help and care for others. This is what makes people beautiful. Fashion is fun and beautiful because it is an art form that brings into reality new ideas and has no restrictions. Its whimsical and can change when you want to change your fashion. Fashion is a personal thing. I hope one day the people of this Earth will realize that all that importance on bodies is the wrong route to happiness and that their energy should be on making each other happy and having fun and looking outwards and soon people will truly see one another for the beauty that they really are...no matter your body... Lets live life to the fullest and use our bodies to be active and be proud for whom we are. Be who YOU are. Take care of yourself and of others and chose to be as beautiful as you can be through what you DO and then there will be true beauty everywhere. Accept all of mankind for how they look and for their religion and cultures and learn from each other and then there will be peace on Earth. And all people with Alopecia can then walk around bald and not have a care in the world about how they affect other people’s feelings or their own. Being bald is not important! It’s what you doto make this world a more happy and beautiful place that’s important!