With her athletic figure and cheerful disposition, you’d be hard-pressed to imagine that Sherry Soon, the founder of the local ground-up movement Be Kind SG, is living with a long-term autoimmune disease.
But the 38-year-old Soon suffers from vasculitis, a condition that causes her blood vessels to get inflamed.
Speaking to The Pride, Soon explained: “When my autoimmune disease flares up, ulcers appear all over my feet and I am unable to stand or walk without pain.”
Due to her condition, Soon is usually unable to walk or stand for long periods of time. She has also been hospitalised on numerous occasions. In 2014, after suffering from a femoral fracture due to the side effects of her medication, Soon was forced to relearn how to walk.
“My illness impacts my life in many aspects,” she said. Yet this impact is something the layman doesn’t see, or understand.
Soon added: “Often, autoimmune diseases are invisible as the sufferer can look perfectly healthy when the disease is inactive. However, the person will face limitations in certain aspects of his or her life and have other symptoms such as fatigue, aches, nerve pain, skin conditions and more.”
She recalled how a few years ago, a fellow volunteer at a fundraising event judged her harshly for walking too slowly.
“The volunteer, who was unaware of my condition, asked me to get something for her,” Soon shared. “As I had just recovered from a flare up, I walked rather slowly. She huffed that I was walking too slowly and rushed past me to do it herself instead.”
Soon remains affected by that incident to this day. “I felt judged at that moment,” she explained.
She wants to help others suffering from invisible illnesses
Not many people understand what it’s like to live with invisible illnesses.
Soon clarified that it’s not just for those with autoimmune diseases: “People with invisible disabilities such as intellectual disabilities or autism may also get into situations and get judged in public.”
But while it has been a struggle for Soon to live with her illness, it has not stopped her from doing good. In fact, it has pushed her to be more patient and understanding.
Today, she is the founder of Be Kind SG, a microvolunteering ground-up movement that promotes everyday acts of kindness. And one of the aims of Be Kind SG, which was started two years ago, on Soon’s birthday, is to try and reduce the traditional barriers to volunteering, such as the requirement for volunteers to commit a large amount of their time to a charity or cause.
Soon said: “We advocate kindness as a lifestyle, so that we can work towards a kinder and more inclusive society.
“We also reach out to the ‘less visible’ communities in Singapore, such as adults and seniors with special needs, and inspire acts of kindness by providing micro-volunteering opportunities, like at ad-hoc events to appreciate everyday heroes, and by running informal support groups for people with autoimmune diseases.”
Her latest initiative is taking part in Relay Majulah.
The relay run, which started on Nov 2, will end this Sunday. It aims to raise funds for the President’s Challenge and its 67 supported charities. This year’s run also commemorates Singapore’s 200th anniversary.
This ground-up initiative was started by running enthusiast Gerrard Lin. It aims to form a 200-strong team of runners to cover 2,000km over 200 hours. In May this year, Soon was approached by Lin to join the run.
Although Soon was interested, she confessed that, due to her condition, she did not know if she would be able to join the run: “I never thought that I would be able to participate in a sports event in my lifetime.”
It was only when her husband, 37-year-old banker Chen Yingkai, offered to “cover her balance” by running a longer distance, that Soon decided to participate in Relay Majulah.
Soon and her husband vow to be each others’ ‘legs’ and ‘ears’
Soon and Chen – who suffers from hearing loss – first met each other on a blind date in 2015, with the two going on to tie the knot two years later. Rather aptly, the theme they chose for their wedding was, “In travelling, a companion. In life, compassion”.
And that theme still holds true for the couple today, as they now act as each others’ ‘legs’ and ‘ears’. Said Soon: “I will help him pick up words that he cannot hear, especially during group conversations. And he will help to lighten my load when I’m carrying heavy items, and will run various errands on my behalf.”
Soon said she was incredibly touched when Chen offered to participate in Relay Majulah for her. “It really symbolised how he was my ‘legs’,” she smiled.
She added: “Through our participation in Relay Majulah, we hope to raise awareness of all kinds of invisible disabilities and medical conditions, and seek for more understanding and empathy.”
Inspired by other runners
Soon revealed that she’s not the only participant in Relay Majulah who is running with an illness or disability.
“One runner, Jackie Chionh, had to learn how to use only his left limbs for daily living activities such as eating, brushing teeth and writing, after a road accident,” Soon said. Chionh’s right limbs were permanently injured in the accident. Soon added. “Another, Alson Wang, was diagnosed with cerebral palsy when he was three months old.”
Both Chionh and Wang, who are Team SG para-athletes, are also taking part in Relay Majulah.
Soon and Chen have been greatly inspired by such fellow runners. “We have learned from their resilience in life, and how they face life’s challenges with positivity and adaptability,” she said.
Life is indeed full of challenges, but Soon believes that we don’t have to go through them alone.
“The journey with my autoimmune disease has been very complex and tedious.”
But, the small acts of kindness she experienced, especially from her husband, have pushed her to keep going.
“As a result of this invisible disease, I feel that I can relate to other invisible disabilities or medical conditions,” she explained. “Hence, I made it a point to advocate for them through Be Kind SG. Because we can all show kindness, even in situations that we don’t understand. All one has to do is to take the first step.”
Interested to join Soon in the next Be Kind SG event? Visit the Facebook page to find out more.