Community Heroes: How I live with an autoimmune disease and help fellow patients find support and form friendships
In 2000, my life took a sharp turn when I woke up one morning with a debilitating pain shooting down my left leg. It resulted in a “foot drop”, a condition where it was extremely difficult to lift my foot.
After 10 days of tests in hospital, I received a life-altering diagnosis: Vasculitis, a rare autoimmune disease that causes inflammation of the blood vessels.
I was just 19 then and had a hard time accepting that my disease was incurable and that I would have to be on lifelong medications.
The constant intake of several medications came with a host of side effects including heart palpitations, nausea, hair loss, weight gain and digestive issues — all of which made life a struggle.
The tougher episodes had to do with the flares. My immune system, attacking my blood vessels, caused excruciating pain and horrific open ulcers on my legs.
These flares worsened over time, with the strongest painkillers offering little relief. Simple daily activities such as standing and walking became potential triggers, a constant source of frustration as I watched my peers effortlessly navigate life.
I wished that I could be a normal student. The year I got diagnosed, I was studying engineering at Nanyang Technological University, but was coping badly due to the demands of the course.
My condition made things worse. I did not graduate and switched to a bachelor of business (business administration) degree course at the Australia-based RMIT University in 2003, graduating only in 2006.
Living with vasculitis means constant uncertainty. Medications like steroids, crucial for managing the disease, come with their own set of problems.
During a 2014 trip to Kyoto my scarf snagged on a cyclist’s wheel and that resulted in a devastating fall and subsequent hip fracture due to steroid-induced bone weakening.
I had to undergo months of rehabilitation after an emergency surgery in Japan.
Additionally, the invisibility of the disease presents its own disadvantages. While I may appear healthy, excessive standing can worsen my condition. This forces me to get a priority seat for people in need on the MRT train, but the fear of judgement for using a reserved seat adds to the stress of daily commute.
Not knowing anyone else with vasculitis, or other autoimmune diseases, was isolating. It was hard to find anyone else who could understand what I was going through.
Determined to connect with others facing similar situations, I organised a Singapore-based contact group in 2013. My first meeting was with two fellow patients, face to face, and it was a turning point: There was finally a space for open conversation and shared experiences.
As our numbers grew, we started a closed Facebook group called Autoimmune Diseases Singapore in 2015. It had about 40 members at the time, consisting of a diverse group of working adults with specific rheumatological and neurological autoimmune diseases.
When I first started the group, I was working as a learning specialist at a non-profit organisation. Balancing full-time work with organising group activities proved difficult.
Nicole Chan, who suffers from rheumatoid arthritis, joined us in 2018 as our community engagement manager. She quickly became a pillar of support, co-organising our activities.
Today, we have more than 300 members. We meet once every two or three months, both in-person and online.
Members are also encouraged to post their questions and communicate with other members online at any time. We also feature patients' stories on our website, and organise activities like watercolour painting workshops, kite-flying and “makan” (meal) sessions.
During the peak of the Covid-19 pandemic, we packed care packages filled with handwritten “Thank you” messages and created a video expressing our gratitude towards healthcare workers.
With help from the Singapore Kindness Movement and the Ministry of Culture, Community and Youth, we designed a self-care journal that was distributed to more than 10,000 healthcare workers. These journals featured drawings from members of the public to encourage these workers.
Looking forward, our long-term goal is to advocate for greater awareness of autoimmune diseases, even if they are less prevalent in Singapore. We hope to contribute to healthcare policies that consider the specific needs of those living with these conditions.
The journey has not been without obstacles. Juggling my own health with running the group can be demanding, and members' health struggles can limit their ability to contribute consistently.
A particularly hard thing to hear arose when a member talked about her refusal to adhere to her medications, leading to painful flares. Having experienced flares myself, it was heartbreaking to hear of her suffering.
Despite the difficulties, the rewards have been immense. Seeing members form friendships and find solace in shared experiences is incredibly fulfilling.
Recently, we held our first public event at The Red Box in Somerset, where we had members speak out about their feelings of loneliness in their physical struggles and how that changed when they joined our group.
Their realisation, that the group provides a sense of belonging and connection, is truly our greatest success. We let patients know they are not alone on their journey with their autoimmune disease. We believe that it is easy to be kind.
My advice to anyone considering a similar group is simple: Start now. Don't wait for everything to be perfect.
ABOUT THE WRITER:
Sherry Soon, 42, is the executive director of the charity organisation Be Kind SG, and the founder of Autoimmune Diseases Singapore. She is also a member of the Ministry of Health’s Agency for Care Effectiveness' consumer panel and SingHealth’s Patient Advocacy Network.
Autoimmune Diseases Singapore is supported by the Singapore Kindness Movement’s Kindred Grant, which provides seed funding for various kindness initiatives in Singapore.
If you have an experience to share or know someone who wishes to contribute to this series, write to voices [at] mediacorp.com.sg (voices[at]mediacorp[dot]com[dot]sg) with your full name, address and phone number.
