“It’s like a gun going off, and once that’s happened there’s no going back.” This is how Guardian photographer Graeme Robertson describes the onset of alopecia. Robertson developed it 17 years ago. He was 23 and covering the Iraq war, during which he witnessed the 2003 bombing of the UN building in Baghdad that killed 22 people. “I was having lunch opposite, then there were bodies everywhere,” he recalls. A few days later, “I was in the shower, when I got out, I shaved, and a 50p-size clump came off my beard.”

This was the start of a dramatic physical transformation. Before his hair loss, Robertson had a thick beard and a body covered in dark hair. It took time for him to accept that he had alopecia. An umbrella term for hair loss or balding, it is commonly caused by an autoimmune condition that attacks the hair follicles (those with it often cite stress as a trigger). In around 20% of cases, there is a family history – and there is no cure. For Robertson, one of the hardest aspects was the growing disconnect between his appearance and his internal sense of masculinity: “One girl whom I went out with said it was like kissing a doll, because I’ve not got any stubble. She said, ‘If I close my eyes, it’s like I’m kissing a girl.’”

He entered a middle phase, where he had half a moustache, half a head of hair, half a beard, which he got around by shaving daily. However, the psychological impact of losing his eyebrows and eyelashes was significant. “When you lose eyelashes and start getting sore eyes, you lose everything. You either have to accept that there’s something different about you, or go the opposite way and drive yourself insane about how you look or feel.”

Having come to terms with his hair loss, Robertson has started documenting the experiences of others. “When it was happening, I didn’t understand what was going on,” he says. “I wanted to help people who were going through it. It started as a side project then turned into something in-depth, and I saw how many people were struggling.”

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Poppy Aithwaite
18, waitress/barmaid, Teesside

I was eight months old when I developed alopecia and had no hair until I was about three. Then, from the age of three to 13, I had tiny bald patches behind my ears. I used to think it was the worst thing ever. At 13, it all fell out really quickly. I ended up with nothing. I think it was the stress of going to secondary school that triggered it. And being a teenager; your hormones are changing, too.

At school I didn’t want to be different, so I tried to hide it. Wearing a wig was horrendous. I was constantly scared: what if someone pulls it? What if someone thinks it’s funny? I’d get comments such as, “She’s more bald than my dad.” At the time, I couldn’t talk about it. I just sobbed. It got to the point where I wouldn’t get out of bed. I wouldn’t eat, I wouldn’t open my blinds. I didn’t want to talk to anyone.

I dropped out of school when I was 15. I was a mess and I didn’t know what to do with myself. My mam’s a hairdresser, so I started working with her, and at first I loved being able to do all these different things with everybody’s hair, but over time it got harder. I switched to working in bars and restaurants instead, and started seeing a reiki healer. It sounds too good to be true, but she got rid of all my pain. Since then my confidence has just grown.

One summer, the place where I was working was boiling and rammed. I whipped my hair off, put it in the cellar and nobody batted an eyelid. I feel as if I just woke up one day and something had clicked. I’ve heard all the names that anyone’s going to call me by now. If they see me as “that baldy lass”, so what?

Instagram helped, too. There are many different types of hair loss, whether that be patches or total baldness. There’s everything there for people to see. I model for a wig company, and at first I was scared about the pictures being posted. Then I thought, why am I bothered? I want them to see how happy I am. I don’t want to be that depressed person who loses their hair, I want to be that young girl who inspires people to be who they are.

Having alopecia and being in relationships has never been a problem. I’m gay and it’s easier being with a girl. Girls are more understanding. I’ve got a drawer full of wigs. One day I’ve got brown hair, the next I’ve got pink. When I first lost my hair, I felt as if my identity had been ripped away. Now I can be who I want to be.

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Michael Taylor
27, tech worker, Berlin

I used to have a very luscious beard and my alopecia began with a fingerprint-sized hole on my chin. I actually found it endearing. I would walk around work and say: “Can you believe this?” Shortly afterwards, I moved to Berlin for a promotion, and within six months I needed to shave completely. Then I got a patch around the crown of my head. I went to the barber and it was a really uncomfortable experience. He showed me the back of my head in the mirror and there were many patches forming. I realised that this was going to change my life permanently.

When I came back to London for my Christmas break, I went to the local barbershop with one of my best friends, and got my head shaved. I remember seeing a mole on the back of my head for the first time, which was interesting. Then I walked out, feeling very cold and a little bit shaken.

I think I had a genetic predisposition to alopecia, because there are autoimmune diseases in my family. But I also had a really traumatic year while I was losing my hair. I was adjusting to living in a new country; my long-term relationship fell apart; I lost my dog. Suddenly I was single, without any friends. I was withdrawn for a while. I was mourning, essentially. And then I was dealing with this hair loss.

For a while I tried very hard to reverse it naturally. For three months I gave up all of the good stuff in life: cigarettes, alcohol, sugar – even lots of vegetables that are considered inflammatory. I tried yoga and meditation.

Now, I’ve come out the other side and realised my own peace of mind is more important than sacrificing many things in the hope that I will get some regrowth. I have no way of knowing when or if I will get any, and I am OK with that, at least for now.

I had a relatively weak hairline prior to that, so I don’t miss the hair on my head very much. But I miss my beard and my facial hair. I can’t lie about that. When you lose your eyebrows, it tips over into a space where people think that you are sick.

But you have to see the funny side. I live in Berlin, and the clubs there are notoriously difficult to get into, but having no eyebrows helps you get through the door. Online dating is a lot more difficult, because it is a purely visual medium. The best chance of meeting somebody is just being out and living life.

Paradoxically, I am probably less self-conscious now. I think back to how I was, clinging on to that rubbish hairline. Now, I just find that hilarious. There is something liberating about shedding those concerns about how you look.

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Rima Theisen
38, flight attendant, Margate

My alopecia started six months after I had my second child. I had an itchy patch at the back that I kept scratching. I thought it was normal postpartum hair loss. I was in denial. I kept thinking: it’s fine, it will grow back. Then one morning when I started to brush my hair, it was coming out in clumps. Four weeks later, I thought, sod it, it’s got to come off. So, I shaved it all off and raised more than £2,000 for Teenage Cancer Trust.

When I found out that it wasn’t going to grow back, it was a blow. Your hair is a part of your personality. I was always known for my really long, dark hair and I used to wear a huge bun at work. When I went back after maternity leave, I hadn’t told anyone and they said: “Oh my God, are you OK? Are you ill?” I just didn’t want to wear a wig. I thought I would embrace this and be me.

My hair was my thing – I never cut it – so it took me a long time to get used to looking at myself in the mirror. But I kept telling myself it was just a look. Some women choose to shave their heads. Losing my brows and lashes affected me more, because no one would choose to shave off their eyebrows and have no eyelashes. I would take those back in an instant over my head hair.

Alopecia is a strange condition that nobody knows much about. It doesn’t cause physical pain and it’s not life-threatening, but people don’t realise the mental impact. One of my biggest fears was that my husband would not find me attractive any more. It must be hard to be with someone who looks completely different from when you met them. He’s been amazing, but when it came to having sex I felt really unattractive. I just didn’t feel very womanly.

I still get that sometimes, but I’ve realised you can be bald and beautiful, and feel sexy. You just have to learn to trick your mind, to tell yourself that. I wear bigger earrings to compensate for the lack of hair. And I can still wear my uniform, put my red lipstick on and be “the different one” at work. People used to say: “Oh, Rima with the hair.” Now I’m known for being the only bald female crew member out of 4,000.

When you lose your hair, it’s like losing your identity, really, and you have to get to know a whole new self. It does teach you who you are. Alopecia doesn’t define my life, but it has made me realise what is important: my husband, my children, my confidence.

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Laura Buckeridge
actor, London

I started losing my hair during my GCSEs, with a 2p-piece-sized patch on the back of my head. I just remember crying and crying, and then eventually going to the doctor. I was revising and very depressed. I wanted to be an actor, and my dad had said: “No, you can’t. It’s the nearest thing to prostitution.” We were a very religious family, and I made the connection that, because my hair was falling out, God must be punishing me. My dad had this traditional West Indian mindset that “your hair is your beauty”.

In my teens I always had afros and plaits, so you couldn’t see the alopecia. I shaved my head occasionally, and for my wedding, I was fine in front of hundreds of people in a big white dress, with a bald head and an ornate crown. I asked my husband: “How was I so strong then?” and he said: “You just loved being different.” But you can be a confident person and then something happens, and you think, I can’t face it today. In the end, losing my hair took away my career. The whole thing about acting is your image. To walk in the door with nothing… I just couldn’t do it.

When I had children, the wigs came out. I didn’t want to look weird for them. I’d moved into a new area and the last thing I wanted was to stand out. At the playgroups, I was often the only black woman there. My husband is a white, middle-class man who is Oxford-educated, and I didn’t want to have an impact on his career. I was playing the dutiful wife. It feels silly to say that alopecia robs you of your identity, but you just don’t recognise yourself. When I put the wig on, I thought, oh, I remember her.

I didn’t tell anyone my hair wasn’t real for years. I was clutching on to my hair on windy days, smiling when people said: “You’ve changed your hair!” thinking, really? You don’t know? Then I went to see the film Black Panther, and there is a lovely scene where Danai Gurira’s character takes her wig off and throws it across the room. I just thought: yes! Now I have stopped wearing a wig, because I felt I was living a lie.

At first I was terrified, but I love being bald. This summer when I went “topless” I was able to spend the whole two weeks in the pool. And whenever there is another bald black woman, they tend to come up and we have a lovely chat.

You have to be strong, because people stare. You think: why are they staring? Oh yes, I’m black. And bald. I forgot. I do a lot of work in schools and there’s no better education than seeing a black woman who can speak in public, who is bald, and it is normal. I hope that I empower people. I look good without a wig. I’m happy.

* * *

Alice Peck
29, works for the Duke of Edinburgh’s Award programme, Bristol

My alopecia started more than three years ago. I was working in a job with some very burned-out co-workers, and I was badly bullied. I was young, idealistic and hopeful about where I wanted my life to go, so I wasn’t ready for that kind of experience. I began to notice little patches, and at the time I thought it was nothing. I thought it was stress-related and that it would go away.

In the subsequent two years, those patches became bigger, then I got some regrowth and it fell out again. The uncertainty was difficult. I was very paranoid. I was obsessed with this idea that everyone was staring at me. Every day I’d cover my hair over the bald patches, and pencil in eyebrows.

By this time I was working in refugee camps in Larissa in northern Greece, and it was very difficult to acknowledge my own struggle. I was waking up with a pillow full of hair, then doing stressful humanitarian work. There was shame that I was even struggling, then the shame of looking so different, and feeling so weird and alone. I couldn’t talk to anyone about it because the situations we were facing were so much bigger than mine.

I left Greece after realising that my health was really being affected by the stress. I went back to my parent’s house for the first time in 10 years and lived there. By then, my hair was falling out in clumps and I decided to shave it off. Since doing that, it hasn’t always been easy, but I feel much more in control. I took charge of it rather and being a victim.

I had very curly hair that no wigs can really imitate. Trying to “own” my baldness is the way I cope with it. I wear more makeup now than I did before and I wear more statement earrings. Seeing other women with buzzed heads or who rock their baldness is empowering. I date men and women, and I think with women it’s much more acceptable to look different. With men, there seems to be a more shallow idea of what women should look like, or so I think.

I had eating disorders in my 20s, so I’ve never really felt so comfortable in my body. Alopecia has forced me to confront my own image so, in a way, I’m grateful for it. The only hair I didn’t lose was my armpit hair, which is quite funny. Now I’m very proud of it.

* * *

Elena McGowan
52, volunteer and stay-at-home mum, Jersey

My hair first fell out when I was 30, and it made me really miserable. I tried a couple of medical routes and quickly realised nothing could be done. I felt awful. I didn’t really talk to anyone about it and nobody saw me without hair, even my husband. I hid it away. I thought I looked like an alien.

I had a job in a customer-facing role in a bank, so I had to literally put on my wig and put on a face and be the person that people were expecting to see. The first day I went in with my wig, this guy came in and said: “Oh Elena, what have you done to your hair?” I burst into floods of tears, ran to the loo and was there for about half an hour, trying to compose myself. Also, when you’ve got a bit of hair, you don’t have control of where your wig is. I was always worrying about whether it was straight or not. It puts you in a state of heightened anxiety.

At work I was putting on a brave front, but at home I wasn’t. I couldn’t look at myself in the mirror for a long time, because I didn’t recognise myself. Then my hair started to grow back and I was able to ditch the wigs, until about three years ago when it started to thin again. For a couple of weeks I was in utter despair. I thought, I can’t face going through this again: it’s so unfair. Just go away. Leave me alone.

By then I was a mum. So I thought, actually, no. Hair is important, but there’s more to life. And I shaved my head.

The internet didn’t exist when I had alopecia the first time, but when I Googled it this time I was amazed. There’s so much stuff. I started a support group in Jersey and it’s had an amazingly positive impact on my life. It’s lovely to be able to help people get out of the place of despair where everybody starts, to a place of acceptance and happiness. Now, putting my hair on is the last thing I’ll do before I walk out of the door, and quite often I don’t notice whether I have it on or not. I keep my wig in the kitchen on a champagne bottle. Why not?

I’m grateful I’ve got alopecia. Beauty is not all about the outside. And being able to teach that to my daughter, who’s growing up in a complicated world, is a gift.

* * *

Ranjit Senghera-Marwaha
49, NHS manager, Bromsgrove

If you’re an Asian woman growing up, your mum will always make you plait your hair. In the 1970s it was two plaits with a centre parting, and my parting started getting wider. I thought it was linked to eczema, so I modified my hairstyle to accommodate it. Then in my 20s, the doctor said: “It’s alopecia. There’s no cure for it, it’s to do with your immune system.”

Losing my husband at a younger age was probably the biggest trigger, but it didn’t affect me until about two years afterwards. At one point my mum and sister were poorly; I was busy looking after them and my hair came back for two years. Then as soon as they got better, it started to fall out again. I was at my baldest in 2017. I couldn’t look in the mirror, because it just wasn’t me. After my eyelashes fell out, my eyes were swollen all the time, and I was getting allergic reactions. It’s a constant battle.

Wearing a wig is like wearing a tight swimming cap. I can’t wait to get it off. Sometimes at work, I have to go to the toilet, take it off, hang it up, calm my head down, then put it all back on. And wigs stop you from doing certain things. It was hard to date. I used to sabotage relationships, purely because I’d be thinking, how the hell do I explain? He’ll go to kiss me and the wig will come off. The first time I was with my current partner and my scarf came off, I couldn’t stop crying because I just didn’t want him to see the real me. I felt embarrassed. I felt ugly. But on the other hand, I wanted somebody to give me a chance to show that this doesn’t define me.

I wear my wig because I don’t want people looking at me and making judgments. People see guys with bald heads and think it’s part of the ageing process, or he’s decided to shave his head and, actually, he looks quite sexy. They won’t necessarily see the same in a woman. They think: what’s happened to her?

I’d like my hair to grow back, because it’s part of my identity, and I wouldn’t have to wear wigs any more. And nothing beats feeling the breeze through your hair. I miss that. People say: “It’s only hair!” and I’m like: really? I wish there was someone who said: “That must be hard. How do you feel about that? Is there anything you need?”

* * *

Raymond Shek
36, business data analyst, Leicester

From the age of 10, I had a small, fist-sized bald patch at the back of my head. I was quite self-conscious about being different, but my school allowed me to wear a baseball cap. I was picked on, but not a lot. I was probably lucky; the friends I had weren’t bullies. They were quite encouraging. I put up with wearing a cap for a few years, but after a while, I just got fed up with it. My friends would say: “Oh, you’re not wearing your hat today,” but I didn’t think twice. I was confident in myself, even with a bald patch.

When I hit 20, it all fell out within two weeks and stayed the same for eight years. At that age, I thought, what the heck, who cares? I’ll just shave it off. At least then, when I woke up in the morning, I wouldn’t find clumps of hair on my pillow. At first my scalp was quite pale but after a couple of weeks in the sun it evened out, so it just looked normal after that.

But it does impact your life. Not having eyelashes, if you walk past a building site, dust gets in your eyes. My scalp is quite sensitive and if anything like a woolly hat touches it, it gets really itchy. So it gets cold in winter. I have tried dating apps and had no luck on that. People judge on appearances and it’s not until they meet me that they see that I am quite a lively sort of person.

When I meet new people I say: “My name’s Ray, or you can call me the bald Chinese guy.” I think I am the only bald Chinese guy in Leicester. Rather than having people say that to me, I’m saying it first. I’m quite a relaxed, chilled person, and if you have questions about my baldness, don’t be afraid: ask.

People do sometimes. Once, in the supermarket, the security guard asked, “How do you always get your head so smooth? What do you use?” which was quite funny. Alopecia has saved me money on haircuts, buying razor blades to shave my face, buying loads of shampoo. On that side, I think it is brilliant.

People stare at me sometimes, but I don’t judge them for it. I don’t really care what they think. They don’t know the story. If they want to take the mick out of me, then that’s their problem. I feel comfortable with my own identity.

Before this project I thought I was quite alone in this. Now I’ve found out that there is a community out there, I’d like to help other people with alopecia. If young kids can see adults with alopecia being secure about themselves, that will help them feel more comfortable with themselves, too.

Additional reporting by Laura McDermott and Joanna York.

• Alopecia UK, which supports people with hair loss, can be reached at alopecia.org.uk

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