Learning to Live with Vasculitis: Sherry's Story of Resilience and Hope
Sherry's life changed drastically when she was diagnosed with vasculitis after experiencing sudden leg pain in 2000. She had to adjust to living with unsightly rashes, ulcers, and a foot drop that never fully healed. Despite the challenges, Sherry has learned to accept and manage her condition, finding support through organizations she founded like Autoimmune Diseases Singapore and Be Kind SG.
Sherry Soon was diagnosed in 2000 after suddenly waking up to a sharp pain radiating down the whole of her left leg in the middle of the night. Disconcerted and unsure of what to do since everyone was asleep, she limped to the living room to lie on the sofa and eventually fell back asleep. When she woke up in the morning, she experienced a foot drop, where she was unable to move her left foot at all and was only able to move around using her right leg and drag the left along. Interestingly, she did not feel worried about why this was happening until her sister took her to the GP and he told her that she needed to go to the A&E.
About a week from that experience, she was diagnosed with vasculitis.
She had never heard of the condition or autoimmune diseases before and was put on a whole host of medications to treat the condition. The foot never fully healed or felt right again, so she had to adjust her gait, which was slower, to prevent tripping and falling
Sherry was an Engineering undergraduate at NTU at the time, and after diagnosis, she dropped out and transferred to a business course in RMIT. Reflecting back, she wonders if it was the stress of being in a course she was not interested in that triggered the onset of vasculitis.
After graduation, looking for a job became an interesting challenge. Before she was diagnosed, she considered careers in teaching or nursing which were meaningful to her. However, those were jobs that were physical. Sherry needed a job that did not require standing for long hours and was still meaningful. However, a desk job also came with unexpected stress, which she realised was an important factor she needed to take into consideration as stress is a major trigger for flares. She eventually ‘fell’ into special needs education, working at the Dyslexia Association of Singapore teaching children with an invisible learning difficulty, which resonated with her experience with an invisible illness.
The first few years of life with vasculitis were unsightly rashes on the legs, though thankfully they were not itchy or painful. However, the ulcers started to appear, some of which caused her to be hospitalised. One of the worst ulcers started to fester when she was two months away from her appointment with her specialist. It ended up looking like an egg yolk because of the pus that had built up. Back then, she did not know how to ask for help from her doctor. She visited a GP who called her specialist who got her an immediate appointment, and she realised that she could be more proactive in managing her condition. Eventually, she learned to dress her own wounds, including picking the right dressing which is very important as one may end up peeling off the already tender skin.
Sherry had also had to spend a lot of time being hospitalised due to the ulcers. One memorable experience was when the nurses surprised her with a birthday cake when she had to spend her birthday alone in the hospital, which was a source of comfort.
However, being hospitalised did not always equate getting enough rest to heal, when once, she experienced a sleepless night in a shared ward where one of the other patients screamed the entire night. She tried to block the chaos with the curtains, but that also made the environment more isolating and she toyed with the idea of hanging herself with the curtains. Those thoughts were driven away when her friend sprung a surprise visit and opened the curtains.
The ulcers have left their mark on Sherry’s legs, which most people will not see because she mostly wears long pants which cover them and are more comfortable for movement. During her university days, she developed an inferiority complex which made her notice other girls’ legs and envy them for being able to wear skirts.
While dealing with vasculitis was not easy, Sherry found that her mother took it harder. Sherry realised that her mother’s difficulty in accepting the situation was another source of stress, as her mother could not believe that there was no cure for this disease.
Sherry has since accepted living with vasculitis, and that has helped her find ‘Mr Right’. On her first date with her husband, she was upfront with her condition and that she was not planning on having children. Her take is that if she did not accept herself, then others would also not be able to accept her.
Sherry now runs Autoimmune Diseases Singapore and Be Kind SG. Autoimmune Diseases Singapore includes an informal support group for Singaporeans and those living in Singapore diagnosed with autoimmune diseases. Be Kind SG organizes micro-volunteering activities to bring awareness on how people can contribute to a kinder and happier society.