Teen in constant pain, but is all smiles as she shares about her 8 chronic conditions on TikTok , Latest Singapore News - The New Paper

Teen in constant pain, but is all smiles as she shares about her 8 chronic conditions on TikTok

This article is more than 12 months old

Ms Ashley Tan has spent the past four years of her life battling several debilitating chronic conditions and is almost always in pain.

Yet, even as she spares no details about her gruelling battle against her chronic illnesses, she wears the same infectious smile in all her posts on TikTok and Instagram, under the handle @ashleyschronicle.

The 19-year-old suffers from eight health complications, which all started when she contracted hand, foot and mouth disease at 15.

This resulted in her developing various neurological disorders that affect her internal organs, an unstable heart rate and blood pressure, a heightened sensitivity to pain, and migraines. In 2023, she was also diagnosed with hearing loss.

Despite being bedridden, she still finds time to help out at non-profit organisations. She volunteers with social enterprise Lumie Lesson, which provides free lessons to disadvantaged students, and mental health initiative InOne.

Additionally, she also held virtual English lessons for students in Myanmar as part of the Safe Water for Every Child initiative.

Speaking to The Sunday Times from the National University Hospital, where she has been warded since March 2022 due to frequent fainting episodes, Ms Tan said that when she was first admitted, relatives and friends who visited her were curious about her conditions.

She realised there was very little awareness about her chronic conditions, which is why she decided to share about them online.

She started an Instagram account in 2021 after her friends and family encouraged her to. There, she met users from the United States with similar medical conditions. Over several months, they persuaded her to use TikTok to share with a wider audience.

“And so, I decided to just ‘whack’ and see what happens,” she said, grinning.

She was surprised by how quickly her TikTok posts garnered attention.

With a wider reach, she was able to weave a greater support network that she was missing for years. She can now exchange encouraging messages and valuable information with her more than 2,000 followers, and help people in a similar plight who approach her online.

However, going online also means dealing with toxic comments. She was accused by negative users of being attention-seeking and exaggerating her symptoms.

“If I see toxic comments on my Instagram, I take a screenshot and post it to my Instagram stories. I want to show people that this is the reality I have to deal with. Thankfully, I have supporters who defend me.”

But even some of her supporters, despite their good intentions, may say the wrong thing.

One particular phrase Ms Tan dislikes hearing is, “Things will get better soon”.

“I’m very direct, and when people tell me that things are going to get better, I will think, ‘No, I don’t think so.’ This phrase is very cliched and to some people, it’s very depressing to be told that.”

She said that from her personal experience, such phrases tend to create false hope, and can sometimes even lead to individuals blaming themselves when things are obviously not getting better.

“People don’t understand that while you can google the symptoms, people’s response to the disease may vary. So always try to understand them first and put yourself in their shoes. Not enough people do that when trying to help,” she said.

She believes that these problems stem from a lack of public awareness – and that social media can help to address these issues.

Ms Tan also faced discrimination in the past, as hers are “invisible illnesses”. For example, she has small fibre neuropathy, a nerve disorder that results in pain attacks but has no outwardly visible signs.

She was accused of playing truant in secondary school and was often rejected by potential employers due to their unwillingness to work around her health conditions.

To address this, Ms Tan and nine others who are around her age started a support group, Aster, with the dual goals of creating a supportive community for young people with chronic illnesses and raising awareness on medical conditions that are lesser known to the public.

They hope to make headway on this with online and physical projects, starting from June.

Asked what she had to say to others struggling with chronic illnesses, Ms Tan said: “Live. Live by doing things that mean a lot to you. Life is short. So live, meaningfully.”