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Most 19-year-olds would be in school, hanging out with friends, or otherwise enjoying their teenage years.
Ashley Tan has spent the last four years battling several debilitating and painful health conditions.
At 15, she was diagnosed with autonomic neuropathy, non-length dependant small fibre neuropathy, severe autonomic nervous system dysfunction affecting bladder and gastrointestinal function, postural orthostatic tachycardia syndrome, orthostatic hypotension, fibromyalgia and migraines.
In short, Ashley has issues with her gut, bladder and nervous system. She is almost always in pain.
“My nerves are wonky and malfunctioning,” she explains.
“It all started when I got hand-foot-mouth disease (HFMD),” Ashley tells the Pride.
When she was recovering from the common childhood disease, Ashley started getting severe headaches that worsened by the day. She went to see a GP for five days in a row and he eventually sent her to the A&E at KKH. When that didn’t help, her parents took her to see specialists, which led to her diagnoses.
An unexpected turn
After her diagnoses, Ashley’s life took a turn. She was unable to attend classes and spent more and more time in hospital.
She used to do well in school but began falling behind. An aspiring musician (she played the flute for more than six years), she had to stop participating in her school and community band due to her condition. In 2018, she dropped out of school at Secondary 3.
Her hospital stays range from a few days at a time to months. She talked to The Pride from her hospital bed; she has been hospitalised since March last year.
“In the past two years, I’ve been in the hospital about 75% of the time. A very big part of life has been stolen from me.”
The only time she hangs out with her friends now is when they visit her in hospital. Even then, there were many who drifted away: They couldn’t understand or accept Ashley’s condition.
Before she was hospitalised, Ashey tried looking for a job but kept getting rejected because of her medical condition.
One employer even said that she was unable to pay Ashley as much because she did not think she was able to do the work.
Says Ashley: “They didn’t give me a chance. Trying to find a job was the most demoralising, upsetting thing I had to do in my life.”
She dropped out of school in late 2018, but Ashley sat for her ‘O’ levels as a private candidate in 2022. Even then, she faced disappointments.
Her tutors either left because they were unable to cater to her needs, or because they felt that she could not complete her ‘O’ levels. Only one stuck with her.
How she went on TikTok
@ashleyschronicle its been awhile. #fyp #chronicillnessawareness #tiktoksg ♬ Glimpse of Us – Joji
In August 2021, feeling alone, Ashley turned to social media as an outlet for her emotions.
“I had no community; I couldn’t find someone or someplace safe to talk about my conditions.”
She started by recalling the first two years of her medical struggles on Instagram @ashleyschronicle.
To her surprise, she discovered a supportive community online. Her posts began to get a following and she found many others struggling with similar conditions. Some of these new friends from the United States suggested that she document her medical journey on a separate social media account.
Recounts Ashley with a grin: “When I first started out my TikTok, I just whack.”
Unfamiliar with content creation on TikTok, she simply posted whenever and whatever she wanted to. She didn’t find any other Singaporeans with similar personal challenges on the short-form video platform.
“I felt like I was the only one.”
Then more people started picking up on her account.
“I suddenly realised there were more like me when people reached out to connect and ask for advice.”
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Slowly, she discovered a local community of those with chronic conditions. Ashley continued talking about her medical journey on TikTok, hoping to help others understand chronic conditions better and change their perceptions.
Of course, being active on social media also means dealing with toxic comments.
Ashley has been accused of overplaying her conditions for clout.
For example, she has small fibre neuropathy, which presents as intermittent painful sensations in her body, often in her hands and feet.
“People ask ‘how bad can it get?’ (in a disbelieving manner) but they don’t realise that many of these chronic conditions are on a spectrum, and I happen to be on the more severe end.”
Others just assume that since she has chronic disorders, she is incapable of working or achieving anything.
Her support system
Thankfully, despite her bad experiences, Ashley has a close group of supporters – her family and friends – and she chooses to focus on the people who have kept her going.
Ashley’s parents are her biggest cheerleaders, empowering her to make her own life decisions.
“My parents are very supportive and encouraging.”
Ashley’s younger sister, Avril, 16, has also gone through her medical challenges – she has had two liver transplants since birth.
“I used to visit her in the hospital a lot and now it’s the other way round. I’ve become the patient instead!”
Other people in Ashley’s life includes her cousin Herman and her best friend Teck Liang.
“They will drop everything to visit me if I am not doing well or need them around.”
Even though Ashley faced many academic challenges, one tutor, Gladys, 27, has stayed with her since Secondary 1.
Over the years, Gladys adjusted their tuition sessions to meet Ashley’s needs and ability, prioritising her wellbeing. She accommodated Ashley’s schedule and over time, became her confidante.
“She was there for me throughout, be it with school, academics or my wellbeing. She truly understood and helped me no matter how late it was.”
Giving back despite her challenges
@ashleyschronicle and soon, we will conquer another. never let anything in life define what you will do, and its okay to take slower roads. my results are not exceptional , but i know i did what i could, spending 3/4 of the year inpaitent etc. I tried my best, and yes, i am grateful and blessed. Thank you for journeying with me. #chronicillnessawareness #fyp #tiktoksg #itriedmybest ♬ Scott Street (Slowed Down) – Phoebe Bridgers
One of Ashley’s challenges is that there is no clear road to recovery due to her chronic conditions.
“Some days it’s okay, some days it’s not.”
Right now, she relies on medication to keep her symptoms under control. Her parents are even looking overseas for medical options.
Despite her challenges, Ashley is grateful that she is still able to find joy and achieve things that many thought she would not be able to.
She passed her ‘O’ levels last year.
“It may not be a big achievement to others (passing the ‘O’ levels) but for me, it is an achievement because I’ve been working towards it for four years.”
She will be embarking on a Diploma of Community Development at Ngee Ann Polytechnic in April.
Apart from her academics, Ashley also volunteers for non-profit organisations. She holds leadership roles in Lumie Lessons, a social enterprise that aims to provide accessibility to quality education and a mental health initiative called InOne.
She also conducts English lessons for children in Myanmar for a non-profit, Safe Water for Myanmar.
An active volunteer even before she was diagnosed, Ashley realised that she had pockets of time when she felt better in the hospital.
But why volunteer when she is sick?
Ashley’s answer is simple: “Volunteering brings me joy.”
It took her some time to find organisations willing to work around her health issues, but she has since integrated volunteering into her daily schedule.
Ashley remains steadfast in striving for her life goals.
“I want to be a teacher, and someone able to create change in the chronically ill community.”
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She hopes to start up a support group for people with physical and mental conditions, with a focus on chronic conditions. She is also pursuing a certificate in teaching English as a second language.
Ashley hopes that there would be a deeper understanding from the public about those who live with chronic medical conditions.
“I hope they won’t simply go “Oh, I understand”, but actually take the time to sit down and learn about us. Not everyone’s medical challenge is the same so it’s important to understand from the patient’s point of view.”
Raising funds for Rare Disorders Society Singapore
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Ashley is a beneficiary of Rare Disorders Society Singapore (RDSS).
RDSS is a charity organisation that advocates for equity and empowerment for people with rare disorders to improve their quality of life.
Support individuals like Ashley by signing up for the upcoming Carry Hope 2023 event organised by Rare Disorders Society Singapore (RDSS). Carry Hope 2023 aims to raise awareness and funds for those living with chronic conditions and their families.
Choose between a 4km and 7.7km walk or jog here. Registration closes on January 31.
If you are unable to sign up as an active participant, you can still contribute to the fundraiser, which ends on April 30. Do stay for their carnival after!
All proceeds from the event, carnival and fundraiser goes to RDSS and its beneficiaries.
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