Amber Soet is a Dutch artist based in Amsterdam. In this blog, she shares her experience with alopecia along with photos from a recent photography project.

It all started with a remark that my mom made. She often did my hair and looked down on the crown of my head on a regular basis. One day, she said that she saw that my middle part was expanding. First, I didn't believe her, but then I started seeing it as well. It had happened due to hair loss. It got even worse over time. I'd wake up every morning, and my pillow would be covered in hair. Whenever I went under the shower and ran my fingers through my hair, I'd have a clump of hair in the palm of my hand before I could even register what had happened.

Eventually, my mom and I went to the GP together. The GP said the hair loss was caused by stress and gave me an anti-dandruff shampoo as a solution. My mom knew that what the GP had given was useless, so she contacted my sister's doctor and explained the situation to him. He made sure that I could be sent to a dermatologist. Once I sat in the dermatologist's office a week later, I was diagnosed with alopecia totalis. At this point in time, this wasn't really a surprise anymore, since my parents had already found out about alopecia on the internet. They told me that there was a possibility that I could have alopecia, but that the dermatologist just needed to confirm it. 

With this confirmation, I felt relief but also deep sadness. My puberty was starting, and I wanted nothing more than to fit in with everyone else at school. I had already stopped looking at myself in the mirror, because I thought the disease made me ugly. My parents saw that my mental health was declining and tried to convince me to get the remaining hair that I still had on my head removed and go fully bald, so that we could then find a wig for me. This way, I wouldn't have to deal with the constant hair loss, and I'd be able to see it quicker if my hair ever grew back. At the beginning, I was very against this idea because I wanted to cling to everything that I'd known, which was my own hair. It made me really angry because I felt like they didn't understand at all what I was going through. 

Eventually, I decided to agree, and I went to the hair salon with them. My mom had explained the situation to the hairdressers beforehand and had made sure that the appointment took place after the salon had closed for all clients, so I would just be there with my parents and the other hairdressers to ensure my privacy. I am turning 30 years old in October, and to this day, I can confidently say that this appointment at the hair salon was one of the worst days of my life. Not because my parents or the hairdressers weren't nice or accommodating, but because I forced myself to keep looking in the mirror with tears streaming down my face as the last remnants of my hair were shaved off and fell to the floor. At this point, my parents and the hairdressers were also crying. Feeling empty and numb, I returned home with my parents. My hair has never fully grown back since. 

Then the search for a wig commenced, and my mom and I went to a local wig maker. He said that he'd never made a children's wig before, but that he'd do his best and that it would take some time before I could actually wear it. As a temporary solution, he recommended that I wear a headwrap. He showed me that there was a wide variety of colors and patterns available and that there were also several ways to tie them. This gave me more confidence because, for the first time since the hair salon appointment where all my hair was removed, I felt like I was finally back in control over my appearance again. Since my eyebrow hairs and lashes had also fallen out, my mom taught me how to draw on eyebrows and how to apply some kohl pencil in my waterline so that my face would have more dimension. I'd never really been interested in makeup, but I could now use it to feel more like a normal person. I wore a headwrap and makeup for a full year. During this year, I received my wig from the wigmaker, but it didn't look good because there was way too much hair on this wig for my small head. It also didn't fit well, and I felt even uglier wearing the wig. The main problem was that children's wigs just didn't exist back then.

On one night, feeling both frustrated and sad about the wig situation, my parents were watching a variety show on TV. The host talked with some kids suffering from cancer who'd lost all their hair due to chemotherapy treatments. He explained that children's wigs weren't really a thing before, but that these kids were now able to wear a wig thanks to Stichting Haarwensen (rough translation: Hairwishes Foundation). The host explained that Haarwensen is a foundation that is built on hair donations. Anyone could donate their undyed hair, and they'd make wigs for children with it. He was the first person to give the kids a wig from the foundation. This was back in 2008: https://www.youtube.com/watch?v=qpQHrHh1WgQ&t=63s My mom immediately looked up the foundation's website and contacted them via e-mail, asking if I would also be eligible for a wig since I was also bald. They responded positively, saying that they had several children with alopecia and that they were familiar with it. I finally got a wig that I felt confident in, and I would keep wearing wigs from the foundation until I was an adult. Last week, 18 years after giving the first wig to a child, this same host gave the 2500th wig to a 12-year-old girl, which was a very special moment: https://www.youtube.com/watch?v=AcGjISolFKE 

During the rest of my teenage years, I still struggled with confidence and self-image, especially around the warmer months. Going to the pool and swimming with a wig on was uncomfortable for me, but going to the pool bald wasn't great either. People would constantly stare at me, or I'd get kids around the age of 5 come up to me to ask whether I had cancer or not. I knew their questions weren't ill-intended at all, but I didn't feel like explaining myself all the time. I also just wanted to have fun like everyone else. This resulted in me avoiding the pool and swimming for years.

It wasn't until my mid-twenties that I realized that my body is temporary and that it will perish once I die. I also concluded that I was more than just my body or my looks. With this insight, I felt a lot of freedom. I slowly worked up the courage to leave the house bald, which led to me going to the gym bald. I even went out to a nightclub bald, something a younger version of me could have never imagined. Now at 29, I leave the house bald without any issues. I often even get complimented by others about it. I don't think this really even has much to do with how I look - it has to do with confidence. And confidence is the most beautiful thing someone can wear.

The journey of alopecia is really a process, and this process is different for every person who suffers from it. People can tell you a hundred times that your hair doesn't define you and that you're beautiful, but you have to believe in that message yourself first in order to truly feel and live that way. In the past years, I've done a lot of deconstruction and unlearning about how society teaches women that hair is what makes them feminine or even desirable. Lots of girls and women are still conditioned to believe in this damaging narrative to this day. By living my life as authentically and as freely as I can, I challenge the status quo. Hopefully, it can inspire other people to do the same, whether they suffer from alopecia or not. 

About my work

For me, putting on a wig now feels as natural as putting on a pair of pants,  but most people have no idea what goes on behind closed doors. With these images, I want to show the real and raw process behind my daily appearance and create more awareness about this subject. That there's more than meets the eye - that everyone carries their own story.

I would like to continue working with like-minded people who are open to experimentation and free expression. I want to show people that it is beautiful to be vulnerable, because this can inspire others enormously. I already do this by adopting an open attitude in my interactions with my models. In my work, I want to keep contributing to society so that more awareness is created regarding specific social issues. Examples of my other works include my series on bisexuality (Bi The Way, We're Still Here!), a series on endometriosis and women's healthcare (Invisible Threads), market vendors with a migration background who contribute to Amsterdam's food culture (Market vendors of Amsterdam), and a portrait series on musicians and the places where they find their inspiration (Creatives).