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‘I looked like a mannequin’: Content creator Adeline Tay on dealing with hair loss and baldness positively

The 26-year-old has an autoimmune disorder called alopecia totalis where she lost all her hair, eyebrows and eyelashes within two months. Six years after her diagnosis, she reflects on how she has found acceptance for it, and how a viral TikTok video helped her find purpose in life. As told to Sharon Salim. 

 

‘I looked like a mannequin’: Content creator Adeline Tay on dealing with hair loss and baldness positively

Adeline Tay (@Adelimey) began posting her videos on TikTok last year and now has more than 29,000 followers on the platform. (Photo: @adeltgf/Instagram)

It started with a bald spot the size of a 20-cent coin when I was 18. I had just completed my military basic training with the Singapore Armed Forces Volunteer Corps two weeks before and was at the neighbourhood hair salon. 

My  hairdresser told me there was a bald patch at the back of my head. She was concerned because the patch felt smooth, although she said that she had a client who had a similar bald spot, which improved after she saw a doctor. I didn't give it much thought but decided to go to my general practitioner (GP) to get it checked.

My GP diagnosed it as ringworm, a common fungal infection – I had, coincidentally, just come back from field camp – and gave me a cream to apply. But it didn’t work. 

The hair loss got worse and I grew more concerned. In April 2016, about three weeks later, I went back to my GP, who said it might be alopecia areata and referred me to a specialist at the National Skin Centre. 

That night, when I opened the GP’s referral letter and realised it was more than a hair loss problem – alopecia areata is an autoimmune disease that causes patchy hair loss – I spiralled down the rabbit hole of googling what alopecia is, and found out there isn’t a cure for it. 

I was taken aback. Why can’t it be treated when medicine is so advanced now?

I had to wait four months before my appointment and I was losing my hair throughout that time. The first few weeks were manageable: I was able to hide the bald area by changing my parting or the way I tied my hair – I had really long hair then – but eventually, I started wearing a cap to cover it. 

At that point, I had already lost about 35 per cent of my hair. The 20 cent-sized bald patch grew into a 50 cent-sized patch, and there were more bald spots in other places. My eyebrows were thinning as well. It was very obvious that I didn’t have eyebrows and eyelashes.

Within two months, I lost 90 per cent of my hair and eyebrows. By July 2016, I was practically bald. It was really bad – I was shedding everywhere. 

DEALING WITH THE SHOCK: “THERE ISN’T A CURE”

I searched for ways to change my lifestyle to prevent my condition from getting worse. Then, I was desperate to find someone to talk to – I did find someone, her name is Chan See Ting. She’s the first female Singaporean to talk openly about alopecia. I was quite heartened to be able to relate to her story

I couldn’t accept what was happening to me. It was happening so fast, plus I don’t smoke and I don’t drink. I wouldn’t say I’m the healthiest, but I’m aware of what I eat and exercise to keep myself fit. 

There’s no explanation as to why I have alopecia. The doctors said it may be due to stress, but they couldn’t pinpoint the triggering factor.

‘I LOOKED LIKE A MANNEQUIN’: UNABLE TO ACCEPT THE PHYSICAL CHANGES 

I was infuriated, frustrated and desperate to seek help. The physical changes were really hard to accept – I have never shared this in an interview before, but I’m sharing it now because I’m at a place where I’m much more comfortable talking about it.

I stopped looking at mirrors – I didn’t want to look at myself. My dad had to remove anything reflective in the house or anything where I could catch glimpses of myself in. 

I took showers in the dark because I didn’t want to see my hair on the floor. I really hated knowing that I was losing hair every second. 

I looked like a mannequin. The screen protector on my phone is matte – because back then I had a reflective screen protector and I didn’t want that. Now, it’s become a habit.

My dad had to remove anything reflective in the house or anything where I could catch glimpses of myself in. 

It was a really difficult and crazy transition period, but I still went to school every day. I was in my third year at the Institute of Technical Education and my classmates could see the physical changes I was experiencing. I still took photos with my friends, but I closed my eyes. 

I didn’t want to be around people for a few months. I used to be very active in school and had many CCAs, among them, chairman of student wellbeing and vice president of the Red Cross. After my diagnosis, I quit all of it and stopped my commitments as I couldn’t take care of myself. I felt irresponsible for quitting but my teachers were very nice and understanding. 

I was in my late teens then, so I was also really worried: Was I ever going to get a boyfriend? And if I do have a boyfriend, would my future mother- or father-in-law accept me? If I had a child, would he or she get bullied because their mum looks very different? 

These questions came to mind, and I figured that if I don’t accept myself, not many others would accept me.

“SEEING ME THIS WAY HAS BEEN HARD ON MY FAMILY”

I know that my condition and seeing me this way has been hard on my family. My parents were very worried about me. They did not neglect my younger brother, but they would focus on me. My mum would cry every day, and my dad was stressing out and trying to find remedies that would help. When I was unhappy, they were unhappy. 

There are treatments available, such as applying steroid cream on the bald spots, but all medications that involve injections or that have to be taken orally would cause side effects, such as bloating and constipation. 

During that time, I was still planning to sign on with the Army, so I didn’t want the oral medication to affect my health. I applied steroid cream on my scalp for a while, but it irritated it, and I stopped. 

My doctor told me that the bald spots might recover on their own. It’s something that is common, and I found some sense of comfort in it. But I didn’t expect that mine would be such an extensive hit, where I’d eventually lose all of my hair. This is called alopecia totalis, a more severe form of alopecia areata, where there’s complete hair loss on the scalp and face.

FINDING PURPOSE THROUGH TIKTOK

My friends knew me to be an upbeat person, and I told myself I shouldn’t be this sad. I had to accept that I would look like this for the rest of my life.  

I didn’t expect that mine would be such an extensive hit, where I’d eventually lose all of my hair.

About two months after my GP referred me to the National Skin Centre and while I was waiting to see the specialist, and after the hair loss escalated, I started brushing my teeth while holding a spoon with my other hand so that I could see my reflection in it, but not for too long. 

Then I slowly moved on to mirrors. I told myself this was the worst it would get. I had been so afraid of losing my hair, but seeing myself bald, without eyebrows and eyelashes, I realised this was it – I’ve got nothing more to lose. 

It wasn’t easy to start talking to people again. I only started removing my beanie in 2018, two years after my diagnosis. In 2019, I decided to try not wearing my cap to school, in my final year in polytechnic. All in all, it took me about three years to be comfortable with myself.

There was a lot of help and support from the people around me. For example, during the five years that I volunteered with the Singapore Armed Forces Volunteer Corps, they asked me to share with school students what my basic training experience was like. When I first did it in 2017, I was already bald. People didn’t really make fun of me, and that’s how I got to slowly engage more people.

Today, I am a content creator and have recently joined a local media company to co-host a video series called Tea Talks, where we invite strangers on the street to have tea and share their stories. 

The thing is, I never intended to become a content creator. In October last year, there was an Asian koel bird on my doorstep, and it was “calling” the entire day. I decided to film it, posted it on TikTok, and that clip went viral.

In one of the earlier videos I filmed myself in, there were people who commented on my hair. One asked: “Hey bestie, the bird is very noisy but what happened to your hair?” I took the opportunity to share about alopecia, hoping to reach out to others with the same condition. 

That video helped me realise that I have a passion to tell people about what alopecia is. I didn’t expect TikTok to be a platform that would allow me to do that. 

That’s how I managed to reach more alopecians in Singapore. I started a small Telegram chat, and now we have about 15 people in the group. It was really heartening as they were sharing their treatments and encouraging one another. That was something I wished I had when I was first diagnosed with alopecia in 2016. 

My condition is not life threatening, but it’s life altering. It changes you emotionally and physically.

Fortunately, I landed on the wholesome side of TikTok. Everyone has been really encouraging but some days, I get nasty comments like: “This may be karma from your parents”, or I would be labelled a tomboy. 

Generally, I don’t let these comments affect me. For every bad comment, there are more than 10 good comments on my platform. I respond to the comments that give me the opportunity to educate a point, such as raising awareness about alopecia and how impactful words can be.

Throughout my alopecia journey, I experienced regrowths (where hair grows on certain areas)  and relapses (where I can lose all my hair overnight). Being on TikTok allows me to document that. 

For example, I had regrowth all around previously, but I lost the sides of my hair in May this year. It is growing in patches now, so I’ve shaved it to look neater. I was able to make a video and talk to people about what regrowth and relapses look like. 

In a way, this helps me to feel less alone, and embrace the relapses better.

Now, I often tell my parents that I’ll do just fine – with or without hair. My parents also find it comforting that I’m able to talk about my journey on TikTok. One time, my mum cried when my Polytechnic sent me to the Istana for a reception, and I had to wear the school blazer. I decided not to wear my beanie, so I went to the Istana bald. 

My mum was really proud of that moment and teared up. It was a huge step for me, and my mum saw that I was brave.

Dealing with alopecia has changed me into a more compassionate person, and someone who can actively listen to others and try to understand what they are going through.

As women, we often allow hair to define us. It is a very important piece that we wear on our head. I agree that my condition is not life threatening, but it’s life altering. It changes you emotionally and physically. 

Personally, I'm still struggling when it comes to self-love and self acceptance, but we have to remember – we are the ones who can love ourselves the most.

CNA Women is a section on CNA Lifestyle that seeks to inform, empower and inspire the modern woman. If you have women-related news, issues and ideas to share with us, email CNAWomen [at] mediacorp.com.sg.

Source: CNA/ss
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