Interview Laura Knezevic (25)

Since when have you had Alopecia? What form do you have?

I have had Alopecia Areata since the age of 11. So for 14 years. More than half of my life.

What was your most negative experience with your Alopecia?

I think if you have had Alopecia for so long, there is no specific event to talk about anymore. Over the years, however, there have been two things that make me angry or sad. The first one is, when other people allow themselves to make a judgment about you, and secondly, if they allow themselves to speak like they know what I should do, what is best for me, to make a diagnosis. I think most people are well-meaning in their comments, but it can become very strenuous for you inner healing process if you have to explain to your environment again and again that you are actually okay with being the way you are. There are people like my family and my closest friends, whose opinion I value a lot, but others have simply no right to interfere with my life, and I have unfortunately spent too much time listening to those people.

What was your most positive experience with your Alopecia?

I think that was the whole last year for me, a very good year. I’ve had the “What if …” game with the Alopecia. What if I had not had Alopecia? I think I would not have made a trip around the world. I would not have got to know AA Switzerland, Romina and all the other great women, and I would not have had such nice encounters only through my writing.

Do you think your Alopecia will be gone one day?

Honestly? I do not think so… Although this may be too harsh for many affected people to read, but I’ve tried so many things, been through highs and lows, but still there is no consistent solution in sight. But I must also say that this thought does not frighten me anymore. I would be very open if someone told me they shared another view or that my hair head should start growing again all over my head, but let me say this straight: I’m definitely not waiting for it.

If your Alopecia were a person, what would you tell her?

I would stand face to face with her. I would look at her very intently. I would apologize for the fact that I have blamed her for so many things and then give her a big hug and say, “thank you”. That sounds very kitschy and I do not want to glorify or put fake glitter over at all. However, I found my peace of mind when I was no longer angry about the fact that I had no more hair on my head. Then I began to see clearly what I had learned in all these years and what could have escaped me, what had given me so much life experience and maturity. And I do not want to miss a thing.

Laura’s story

I can remember very well when my mother was drying my hair in the summer of 2002 when she discovered the first bald spot. We did not think about it seriously, as two years prior to that, my father also had a big bald spot on his head for several months. The pediatrician said: “Inherited.” Things will get back to normal again. But they did not. By winter 2003 all hair disappeared at the back of my head. Mo mother took me to a dermatologist every week and I was prescribed zinc, cortisone and light therapy. Sometimes also a gel or a tincture on top of it. My mother tried everything. She was an angel, a tower of strength and she still is like that. She read a lot, sent in my hair and blood samples for tests. I never worried, because she did everything for me and was very optimistic about the whole matter. Everything seemed so unreal to me. But one day the idea occurred to me for the first time: “What if it my hair does not grow back on again?” At the same time, I had to change school to go to a secondary school because the village where I grew up did not have its own secondary school. From the moment I arrived, it felt like hell on earth to be around my new classmates. It actually didn’t bother me so much that I did not belong, but the worst thing was that they were exceedingly mean to me. I came home crying every day. My mother could not bear it anymore, and she, who was never a supporter of self-pity, encouraged me to do something about it all. So I stood in front of the class one afternoon, making it clear to them how their behavior hurt and insulted me. To this day I can still hear myself saying: “I will not become your friend. I just want you to leave me alone – please! ”
That was the moment when I realized that Alopecia was now part of my identity. It taught me that you cannot let people hurt you. From then on, things went better with my classmates and for three years life just continued. My mother crocheted a cap for me, because a wig did not come into question for me at that time, but I did not want to go through the world so ‘naked’ either. In the spring of 2006, I started a course of homeopathy and my hair came back. So until the next change of school, it was possible for me to have some hairstyles that would cover the bald spots on the back of my head. It went on like this for several years. I never again lost as much hair as in puberty and could well hide my hair loss. Practically no one of my new classmates knew I had alopecia. It continued like that when I started studying at the University of Education in Zurich in 2010. Small bald spots here and there almost did not bother me as they came and went. I was absolutely convinced that one day I would have all my hair back again.

When my studies were over, I went to Florida on vacation and there I started losing a lot of hair on the sides of my head, for the first time in many years my hair was falling out again. At first I thought – as many people suggested – that it was just because of stress, you know, the studies were now over and I had to start my first job. But in the following winter it was no longer possible to hide my hair loss problem. I was back in the same situation as 10 years before. In this very painful period, I paused for a moment and asked myself, “What would you rather do?”. So I decided to shave my head and remove all the little hair that was sill remaining. With my best friend, I went to a hairdresser and without waiting for me to say anything, she just took out the razor. I insisted on paying 25 Euros for the service and went out of the studio, and for the first time I felt the wonderful feeling of the sun on my entire scalp.

At that moment I was more than happy. No more hiding. No elaborate hairdressing with powder and hairspray and gel. I was the way I was. I just made a small mistake: I wore head scarves, despite my newly-gained freedom. In hindsight, I have to say that while I did what my body was telling me, I nevertheless tried to fit into my environment. How could one work with children having a bald head? What would the parents think? Everyone would probably think I have cancer.

Despite having shaved my head, I did not give up the hope for healing and went through the two most painful therapies: DCP and cortisone injections. I tried both for several months until I gave up. The hair came out and then fell out again. That was the point at which I said, “Stop,” and I meant that. Over all those years Alopecia never gave me pain. And now, beside the mental pain, there was also physical pain. I was running out of strength and power. And so I decided to quit my job and go on a round-the-world trip.

Last year in the summer it was this! 6 months with 4 destinations: New York City, Fiji, Australia and South Africa. I discarded my headscarves, I did not pack a single vitamin pill, and just left. It was a sense of freedom that words cannot describe. In NYC, I could walk around any way I wanted, because in this city you can meet lots of ‘rare birds’, people with all sorts of appearances. I visited a language school and met great people. One day I talked to my English teacher about beauty ideals and she told me a very interesting story:
In her hometown in Louisiana, African women were considered ugly if they do not have smooth straight hair. This fact reminded of slavery history somehow. So many women straighten their hair chemically. The first week you feel great and go on dates. The second week your hair gets wavy again and you start feeling uncomfortable and in the third week you are only waiting for an appointment with your hairdresser. She described it as «three-week prison». I remarked to her that I lived in a «five-day prison». On the first day, when I’ve just shaved my head, I feel great. I could be a woman who has decided to go through the world the way she is. However, from the second day, I start seeing the dark spots where the hair is still growing and I then shave it again on the fifth day.

The change of scene in NYC did more good to me than anything ever did and I was really full of energy, my ‘inner battery’ recharged, ready to immerse myself into the traditional and conservative Fiji. The time went very fast and the hearty inhabitants of the Fijian village quickly learned that women in Europe just walk around the way they want. There I learned that there is a very disarming weapon to counter the “stupid looks”: that is, a smile. As soon as you see someone staring at you: smile and things already seem to be only half as bad. As I landed on the Australian continent, I felt no need to shave my head any more. I did not want not to be noticed any more. I wanted to show myself the way I was, because there were still places on my head where hair was cheerfully growing. And lo and behold: the hair came back almost on the whole of my head. When I left Australia at the end of the year I had almost 4cm-long hair almost on all of my head.

Although South Africa was the absolute highlight of my trip, I noticed how my hair started to fall out shortly before my trip home. I told myself to remain calm, but on the other hand I was almost glad that my hair would be gone while I was still travelling. I was afraid of coming home and hearing from others that during these six months I had been very stress-free and cheerful and easy-going and that this was the decisive point of the recovery. At the same time, I wanted to return to my usual life, go on with my profession and daily routine and not just live like a nomad because of my hair.
As I suspected I lost the bulk of my hair again two months after the return from my trip. But this time, I swore to myself that I would not wear a headscarf. And since May 2016 everyone knows me only as a bald person. I have learned over the course of time that we often worry too much about what others think about us. Recently I was with at a fondue with some refugees. So far the young men from mostly Islamic countries had known me only with my winter hat on, because we had done many activities outside. I was a bit apprehensive about how they would react to my baldness, but it turned out that not a single one of them had a problem with it or felt uncomfortable with my presence. I also have to say that I ‘ve been really lucky because of two things: firstly, that I have never really lost eyebrows and eyelashes and secondly, that I work in the social sphere. You have to be less concerned about how you look. Children accept you any way you are.

Although I found a great deal of good things having a bald head, I mourned the loss of my hair in spring 2016. I always say it was as if I had seen Santa’s sledge full of Christmas presents and then he just flew away without leaving me any present at all. From this loss, I started feeling hurt, so I googled the Internet once again about Alopecia and eventually decided to join the AAD on Facebook. A few weeks after joining this group, they shared a photo of a first meeting in Switzerland. And so I met Romina Rausch, the founder of this website. We understood each other right away, and she was the first person I could tell my whole story to and who knew exactly what was going on inside my mind. She told me about her idea with this website and that she did not have anyone who could take interviews from those affected. I felt that was something that would do me good. And so I’m sitting here. After Priscilla and Isabel’s interview I now get to write my own one.

In writing I have managed to find my greatest cure. Last summer, I decided to have one last go at it and went to an endocrinologist who prescribed hormones for me. When I got home later, I felt I did not want to take these hormones. As competent as I felt – I just could not. It took me a while to get to the bottom of the things to understand why I did not want to take hormones: since the end of my journey I felt good again to be myself. I do not want to risk another failed therapy. I do not know if I could handle another disappointment so well again. You read so much and rely on holistic therapies, but only rarely did they actually improve my hair. You change the diet, you start with yoga, you do not drink alcohol for a while, but nothing has ever brought for me any significant change in my hair. So I stopped doing some things which I felt were restricting and affecting my quality of life. And I’m glad I decided not to take the hormones. I have already done far too many therapies, which I knew beforehand would harm my body and my mind. This time I did not let myself be pushed by doctors.

If you are affected by alopecia, it brings about changes not only in your inner world, but also rearranges your environment. I have been blessed to have a loving community of people around me, so there is nothing more I could wish for. It took my family a while to come to terms with my bald head. I did notice that it bothered them not because it was not aesthetic, but because they thought I felt uncomfortable being bald. That was, until I told them that this was not the case. Now my sister can also stroke my head and my father can give me a kiss on the head.

As a teenager, I sometimes imagined how a fairy would put a spell on me and bring me back to that evening when my mother had found my first bald spot. I imagined her asking me, “Laura, you know what’s coming. Do you want to go through it again? “Yes, I do. Because through all of these experiences, I have learned to see who matters to me in life and who doesn’t. Without this disease, I would have learned this much later or never learnt it at all. People who let you down, who do not help you or want to change you because you do not fit into the corporate image – just leave them alone. The really important people are those who are still there for me in my life. And I wouldn’t want to exchange this experience for anything in this world.

In conclusion – What would you advise future Alopecia patients, Laura?

Trust yourself, because you know exactly what is good and what is bad for you. Get help from those who are good to you and have faith that everything will turn out okay. Never listen to the voices from the outside when your inner being, your well-being, your experiences, your body, tell you something different.