The last activity Adeline Tay (@adelimey) engaged in as a “healthy human being” was having lunch with her parents at a local hawker centre. It was 2016. She had just gotten off a doctor’s appointment with a medical referral in hand, oblivious about what was to come.

“That night, I opened that letter and saw the word ‘alopecia’. When I Googled about what alopecia was, it changed my life. I realised I had an autoimmune disease,” Adeline recounts.

An autoimmune disease is a condition in which an individual’s immune system attacks other tissues in the body. Triggers for such diseases, though generally difficult to pinpoint, run the gamut from medication to viral or bacterial infections. The letter, she says, had contained the prognosis and Adeline was referred to a specialist for a consult.

For those with alopecia, hair loss can happen sporadically, resulting in patchy bald spots that may expand in size over time. According to Pfizer, an estimated 0.08% of the global population experience alopecia totalis (total scalp hair loss), while an estimated 160 million people worldwide experience patchy alopecia areta (the condition that sees hair loss in patches, typical in the size of a coin). Adeline adds: “When it comes to alopecia, there is no cure.”

As the condition developed, from the size of a 20-cent coin, she even lost 95 per cent of her hair, including her eyebrows and eyelashes, at one point. “I went down the rabbit hole (of despair), and I took a while to cope,” says Adeline, now 28.

Adeline’s claim to TikTok fame began in 2021, when she first posted a video about an Asian koel bird, which had since gotten close to 400,000 views. “I am an accidental TikToker,” she quickly shares. As she posted more videos, viewers eventually saw her thinning hair and quipped about it, which prompted her to share light-heartedly and candidly.

Since then, Adeline has put together “All about Alopecia”, a playlist of updates and explainers on her condition to some of the commonly asked questions, spreading awareness of alopecia along the way. Known for her feel-good content and stories that spread positivity, she has since amassed more than 41,000 followers on TikTok.

Today, Adeline is a content creator managed by UNFOLD Asia, the media group that oversees media brands such as Our Grandfather Story, Ribbit.fyi and more. Here, check out our exclusive story with Adeline.

Ler Jun: How would you introduce yourself to someone you are meeting for the first time? 

Adeline Tay: Hi, my name is Adeline, but you can call me Adel.

LJ: Who is Adeline in front of and behind the camera? 

AT: I am someone who tries to go beyond my comfort zone. Deep down, I am introverted and shy. And I want to spread positivity. 

LJ: As a content creator, I’m sure you have had multiple interactions with fans and followers; what do youth want to see online these days? 

AT: People resonate with content that is relatable. It’s an interesting observation that an aunty having her lunch in her car, with a packet of cai fan (economical mixed vegetables rice), and sharing about her day could go rival easily. So, I guess that real, organic, human nature connection works well.

LJ: We particularly enjoy your $8 Ventures series. What is it about?

AT: I really wanted to explore Singapore. Singapore is so small yet so huge. There are many spaces I have yet been to, and we thought having a small but fair budget to conduct this exploration would make good content. Like I said, I am really awkward in person, so me vlogging in public is somewhat funny too.

@ourgrandfatherstory What can you do with $8 at the Hay Dairies goat farm? ? A goat bit my shirt and I tried goat milk for the very first time! ? #haydairiesgoatfarm #goatfarm ♬ original sound - OGS

LJ: What’s your favourite type of content to create? 

AT: Honestly, it took me about two years to finally accept that I'm a content creator. I fell into this industry by accident, and I kind of struggled with it because I felt like I don't have a niche. I often struggled with finding a niche; I could be sharing about an inflatable keychain in one video and crying about friendships in another. Along the way, I discovered what I wanted to create – that is content that help others feel less alone.

LJ: You have produced so much content - some fun, some endearing, and some heartwarming. What’s one memorable piece you’d cherish dearly? 

AT: The one where I responded to viewers’ queries about my hair loss. I remember joking about it, citing academic stress as one of the reasons so; meanwhile, my mum said it was because I ate too much instant noodles. Looking back, that humour broke the ice and allowed others to feel more comfortable to ask about alopecia. 

LJ: We particularly enjoy your $8 Ventures series. What is it about?

AT: I am quite a homebody and I really wanted to get out of my comfort zone. Then, it hit me: why not explore certain neighbourhoods and capture the community spirit within? The $8 is a hook that allows me to explore different parts of Singapore.

LJ: Let’s talked about the skin condition alopecia. When did you realise you had it? 

AT: I was first diagnosed with alopecia in 2016. Of course, it was very difficult for me upon learning of my diagnosis. I think I spent a good while away and fell off the grid.

It’s been about close to a decade. It’s still an up-and-down journey. I still get kind of paranoid here and there. Last year was a rather special year because it was my first time having a relapse publicly. Previously, when I had my relapses, I wasn’t on social media.

@adelimey watching Inside Out 2 made me realise that we all have different parts of ourselves like joy, sadness, anger, fear, and anxiety. These parts, even anxiety, are trying their best to protect us and they want the best for us. I now understand that my anxiety, despite being overwhelming at times, is just doing what it knows best. This new perspective has given me a little more compassion for myself, and I will try not to be so hard on myself the next time I feel anxious. I hope my sharing made sense, and friends, I hope you won't be too hard on yourself too. ? #tiktokforgood #tiktok_partner #mentalhealthawareness #insideout ♬ Will to Live - Jacob Yoffee

LJ: Was it a deliberate decision to share your relapse publicly?

AT: I decided to make it public because one of my videos actually went viral by accident. It was very obvious that in the video, I could no longer upkeep my hairstyle: the bald patches were really bad. I was quite taken aback because I had to turn off comments in those videos because some of the comments were pretty nasty.

Many of my followers tried explaining to these naysayers what alopecia is, but sometimes you’ve just got to accept that people wouldn’t want to understand everything. That was rather difficult for me. After thinking it through, I remembered why I started TikTok and that is because I wanted to make my experience purposeful.

The same goes for relapse. I wanted to give my relapse a meaning. I am not being noble or anything, in fact, talking about it personally about it helped me cope better. I am very humbled by that experience because I had so much support from the online community.

LJ: In one story, you shared how you grappled with the diagnosis, specifically feeling lost when you realised there was no cure despite modern advancements. How did you cope with this diagnosis? 

AT: I didn’t know what alopecia was when my General Practitioner shared the diagnosis with me. That night I Googled about what alopecia was, it changed my life. I realised I had an autoimmune disease. There was no permanent cure. It took a while to cope.

LJ: How did the diagnosis affect your self-esteem? 

AT: I wouldn’t even meet my friends. I would head to school and return home when classes ended. I was an active student, but I quit all my CCAs.

LJ: What type of content are you looking to produce next?

AT: I believe that being able to be online and have a platform with people following you is a huge privilege. I would want to continue to do good on my platforms. I have always been telling others about how I’d continue raising awareness of alopecia. There’re also things like mental health, which is something that is really close to my heart.

LJ: Finally, any tips for aspiring content creator?

AT: There're a lot of ways that you can explore to be a content creator. You don't have to always put yourself in front of the camera and there are different formats for you to explore. If you never try you’d never know.

Remember, you don’t need a background in media to do so; as long as you have a cell phone, you can create content.

Interview has been edited and condensed for clarity. 

Gen Grit documents the grit younger generation of Singaporeans possess. Passionate, driven and have a heart to call, many of these youths are taking it on their own to empower communities, all while embodying the co-operative values of self-help and mutual help. Here, we profile Adeline Tay, a creative strategist and content creator at UNFOLD Asia.

Photos courtesy of Adeline and Unfold Asia. 

By Sng Ler Jun