Community Heroes: My struggles with an incurable condition inspired me to help others cope with chronic pain

My battle with fibromyalgia, a chronic pain condition, began when I was in my second year at Nanyang Technological University.

In November 2014, I started experiencing swelling hives all over my skin and sharp stabbing sensations in my joints, which eventually spread to all my muscles and caused acid reflux in my digestive tract.

I remember undergoing 18 different blood tests, and a nerve conduction test as well, but there was no proper diagnosis until April 2015.

That was when I was told that I had fibromyalgia, a disorder that causes pain all over the body. Sufferers also experience fatigue and sleep problems. There is no known cure.

I left the doctor's consultation room in a state of shock and cried outside the clinic.

I thought my life was over, and that hope seemed very much out of the question at the time. My mental health deteriorated.

Although it was a real illness, it seemed like no one around me truly believed what I was going through.

As chronic pain is seemingly “invisible”, some even suggested that what I was feeling was all in my head.

Later on, I decided that I will not let my condition stop me from pursuing my dreams.

I knew that the physical pain I was going through could break me or strengthen me, and I learnt to choose the latter.

Due to the symptoms that come with fibromyalgia, I was unable to graduate from university.

Despite it all, today, I teach students from primary school English language and mathematics, and for secondary school students, English language, mathematics and additional mathematics.

In the evenings, I work on my paintings.

When I first got diagnosed, I did not know of any chronic pain support group that I could join.

For years, I pondered over what could be done to better support individuals like myself.

That was how The Visible Collective SG (TVC SG) was born.

TVC SG is a ground-up movement founded in June 2022 with the aim of empowering individuals who live with chronic pain to lead meaningful lives through support, education and advocacy.

We hope that by providing emotional support as peers to those living with chronic pain, this will help them feel less alone in their personal struggles.

Our main programmes are “The Visible Circle” and webinars.

Visible Circles, which are held online, allow our members to support, strengthen and encourage each other by sharing their struggles and victories. They also learn valuable well-being skills from invited guest speakers.

The aim for our webinars is to educate and raise awareness on chronic pain through talks by medical professionals.

Through these webinars, we hope that caregivers, members of the public and anyone keen to find out more about chronic pain will be better equipped with the ways to support an affected individual or a loved one.

Our programmes are fully volunteer-run and as a community, we wish to also build a support group, not just among persons who live with chronic pain, but also among our volunteers.

Today, we have 21 members, who suffer from various forms of chronic pain conditions.

We also have 38 volunteers who help to raise awareness about chronic pain and befriend our members.

TVC SG would not have come so far without the love and support from our members, volunteers and the Singapore Kindness Movement.

It has not always been smooth sailing, though.

During our early stages, it was difficult to recruit volunteers to be part of the cause, because chronic pain among young adults was uncommon.

However, Julio, my husband who is also our other co-founder, and I have persevered in running the movement for the past two years because we believe that there is a need for greater awareness of chronic pain and how it affects the lives of people with the condition.

We also feel that it is important to raise public awareness about chronic pain, particularly among caregivers so that they can be better equipped to support their loved ones.

Through my time at TVC SG, I have had the privilege of working with many people and sharing in their joy and pain.

Their stories of resilience, courage and determination — of how they persistently pursue their goals and dreams despite the symptoms — are truly inspiring.

It is also the “thank you” that several of the members would say to our team during and after our programmes that remind me that the work we do has indeed had an impact on others.

At TVC SG, our tagline is “Making the Invisible Visible”.

While our members may look “healthy” on the outside, many of them experience debilitating pain that disrupts their lives, affecting their daily routine and their school or work schedules. This, in turn, has an impact on their mental health.

It is my hope that we will be kinder and more empathetic towards persons who live with chronic pain in our society and empower them so that they may achieve their goals.

No idea is too big or small to start a ground-up movement — you just need a big heart!

Let none of your fears or insecurities stop you from starting something that could possibly bring a greater good to our society.

 

ABOUT THE WRITER:

Rina Ong, 31, teaches primary school and secondary school students by day, and is an artist by night. During her free time, she also spends time composing new music and playing the guitar. She is a firm believer that vulnerability is one’s greatest strength. 

If you have an experience to share or know someone who wishes to contribute to this series, write to voices [at] mediacorp.com.sg with your full name, address and phone number.