BEYOND HAIR
Beyond Hair documents the experience of having alopecia through photographs and text. Alopecia is an autoimmune disease where the immune system attacks the hair follicles, causing the hair to fall out. Alopecia can take different forms - anything from a small hairless patch to the loss of every single hair on the body.
This work originates from my own experience with alopecia. In the process of losing my hair, I came across a community in Sweden of others living with this condition. This community has become increasingly important to me in how I view my new state of being. Through photographs and interviews with people from this community, I have explored the experience of hair loss. Beyond Hair captures themes in relation to loss, time, identity and representation. It is a story about hair loss beyond preconceived narratives of cancer and aging.
Through this work, I want to raise questions about the relationship we have with our appearances. To what extent do we identify with our physical appearance? What happens when our appearance changes suddenly? And why is hair so closely associated with beauty?
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”I was five when everything fell off. I was so young, not having hair became something I identified with. I remember that I longed for being like other girls. It was a feeling of exclusion. The girls in my class braided each others hair during breaks. Hair was an important part of being a girl.
Wearing a wig became very loaded for me. One day in high school, I went to school without the wig. I couldn’t bear that the biggest focus in my life would be my hair”
"I was always told that I was strong. Others thought that I was bearing my bald head proudly, but I definitely did not. I was shocked when I saw myself in the mirror because I imagined myself as a person with hair, even though I didn't have any. Ignoring and distancing myself from it was my way of dealing with it.
It all caught up on me in my late teenage years. I realized I hadn’t really processed the whole thing. I was afraid of being vulnerable, but when I tried I found that. Today, I try to resist the urge to deny my feelings, and I try to accept that it's never going to feel completely fine"
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- Fanny
”My hair loss has gradually worsened over the last 20 years. It fell off, sometimes it grew back, but gradually it got thinner. Then, one year I go, I got sick, and that was it for my hair. I decided to shave it off. My hair loss has been an ongoing sorrow for me for many years, but there must be limits to how much time and energy I put into that sorrow.
I think it is important to separate the physical and mental aspects of alopecia. Physically, you are not limited by your hair loss. You are still able to go diving or swimming. However, your thoughts about it can be limiting. It is of course challenging to live with hair loss and some days I just want to blend in. But somewhere you have to ask yourself what’s truly important. Life doesn’t repeat itself and I don’t want to live in regret of all the things I didn’t do because of not having hair.
Today, I think of hair as an accessory. Putting on a wig is kind o like dressing up or putting on makeup”
”I never blended in seamlessly. I was born in Korea and there were only two other kids in my school that came from other countries. Maybe that has helped me in dealing with this. For many people, the hair loss seems to be their first experience of deviating from the norm”
"Within the alopecia community, I think there is an underlying assumption about natural-looking wigs being the most beautiful thing there is. The most desirable thing seem to be when no one can notice that you are wearing a wig. Why is that? Why does everything have to look so perfect? If you perceive baldness as something ugly, couldn't it be okay to just walk around and be a bit ugly? You are not obliged to look handsome all the time”
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- Pia
"The old me, before alopecia, would probably have thought that losing my hair would mean losing my will to live. Then, when it actually happened to me, what was there to do? I am surprised by how good I have dealt with losing my hair. I guess I try not to think about it too much, which is hard. In one way, it has made me stronger. I used to care a lot about others people’s opinions, now I don’t really care for the people who aren’t there for me"
”I never really liked my hair. I used to color it in bright colors, it felt natural to choose bright colored wigs”
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- Anni
”I lost my hair when I was 15 years old. It was treated as something that should be hidden. I wore wigs for 25 years and I thought it was horrible. I almost can’t bear to think back at those years. I don’t think I would be alive today if I had continued wearing wigs”
"I even hid it from my children. The summer I turned 40, we rented a summer cabin. I had decided on stop wearing wigs. I went away and took off my wig, and came back to my family with no hair. Since then, I’ve never worn wigs. I understand that people with this condition chose to wear wigs, but honestly, I would like to tell everyone to not spend their energy and money on that”
”My whole adult life, I’ve feared that this condition will pass down to my children. Since they are all grown up now, I letted go of those thoughts. One year ago, when Tobias (my son) showed me a bald spot in his beard, this fear returned. That was a real chock! Luckily, he seems to have judicious colleagues and friends around him, I think that’s important”
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- Matts
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"In autumn 2018, I went through many traumatic experiences. I was mentally doing fine, but physically, my body was reacting strongly. During this time I noticed a patch with no hair at the back of my head, a patch that just grew bigger and bigger. Since 2018, I experience hair loss every autumn. During spring and summer, some of it grows back”
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"The white strands of hair are regrowing hair that never gained pigment. No matter how much I work with accepting myself, my hair loss will always be a reminder of a difficult time in my life. It’s kind of like a scar. Accepting that fact has been the most challenging thing about my alopecia”
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- Cassandra
”When I lost my hair, I was in a safe place in my life. I allowed myself to grieve, but I also got over the grief. After all, it was only my hair. Other things in life became more important to focus on, like starting a family. I got pregnant shortly after I lost my hair. But it’s always going to be challenging. I did not just have a child, around the same time I also got a new appearance”
”The first time I started loosing my hair was in seventh grade. I remember the school nurse came to our class and talked about hair loss in general without addressing me specifically. It was like my hair loss was treated like something that should be hushed and hidden. Today, I think it would be treated in a more open and honest way”
"Of course I am worried that my son will lose his hair too. But if I can accept my appearance, I think it will be easier for him to do the same. Something I really want to teach my children is that anything everyone is different and should look however they want. It would be weird then not to embrace that myself"
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- Jenny
”Seeing myself without hair was very hard in the beginning, but I didn't have time to process my feelings. I got alopecia universalis, (the most extensive version of alopecia), in 2007. At the time, my children were small and I was working a lot. I think the whole thing has caught up on me just in the past couple of years”
”In summer 2014 I decided to stop wearing wigs. I went to a conference with my job and there was a girl there who also didn’t have hair, and the wore a scarf on her head. I started talking to her, and I thought for myself, if she can do it, why can’t I? Around the same time, I separated from my partner. I decided that no one would tell me what to do, say or think ever again. I think those experiences helped me In dealing with my condition”
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- Ina
"I do hope that men with alopecia take their feelings seriously. I know that half of all men get thinner hair around the same age as I lost all of my hair, and sometimes I thought that my hair loss wasn’t a big deal. I got comments from men with normal male hair loss joking about knowing how it felt to lose your hair. I know their intentions were good, but losing your hair in a very unnatural way, like with alopecia, is a different thing”
"In my work as an actor, I can really think of my hairless appearance as an access. The wigs and make up designers were very excited when I did my first production without hair”
"The glasses are a comfort blanket. I feel blank without them, like you can tell that something is missing. They frame my face in a way that I feel comfortable with”
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- Gustav
”My hair was not an emotional thing for me. The hardest part was losing my eyebrows and eyelashes. The other hair loss didn't really bother me"
"I wanted to find others who could relate to my situation so I started looking for a community, and I found the Swedish Association for Alopecia. For a while, I was president of a regional branch of the association. I got calls from media when they searched for someone with alopecia, but back then, in the early 2000's, it was hard to find people. Many were not open with their alopecia, so I did a lot of those interviews. I have learned a lot by talking to others with alopecia, and I know I have made other people throw away their wigs”
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- Synnöve
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The wig became a way of reclaiming control of my appearance. I have an ambivalent relationship to my wigs. They provide safety, but I also I use them to conceal something vulnerable. I wear wigs almost daily and I haven’t been very open with my alopecia. I still find it hard to accept that something I did not chose is a big part of me.
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I started losing my hair when I was 20. Over the course of nine months I lost all of my hair, including eyebrows and eyelashes. Right now, my hair is slowly growing back. I'm trying to come to terms with the fact that my hair might continue to fall out and grow back in cycles for the rest of my life. It's a confusing experience. I am the same person, I have the same thoughts, but my reflection in the mirror is constantly changing.
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Self portraits, Felicia