JUST like most people with a lifelong medical condition, Rocyie Wong (pix) eventually came to terms with the physical pain.
But getting over the emotional suffering has been difficult, made worse by ineffective and sometimes damaging advice from friends and relatives.
But today, Wong has turned this weakness into her strength, using her experience with psoriasis to get other sufferers to open up about their condition, and to advocate understanding from others.
Wong’s journey started when she was nine years old.
“It began with flakes on my hair that I assumed was dandruff. It wasn’t that bad. Just a lot of the white stuff on my shoulders,” she told theSun.
Two years later, her scalp began to itch, leading her to scratch it so vigorously that it started to bleed and became painful to the touch.
“I’d wake up with a wound on my head and blood stains on my pillow.”
Yet, Wong still thought it was normal.
“I thought it was just a skin condition that would go away if I applied skin cream, but it just got worse,” she said.
It was only by chance that she was later diagnosed as having psoriasis. A friend had wanted to test a product on her scalp but was told to consult a doctor instead.
At age 14, she was diagnosed as having psoriasis, an autoimmune disease that causes red, itchy and scaly patches on the skin.
The Dermatological Society of Malaysia estimated that it affects 500,000 to 800,000 Malaysians.
While it appears to be cosmetic, the National Psoriasis Foundation explained that the condition is caused by an over-active immune system, leading to overproduction of skin cells.
Multiple visits to skin specialists yielded the same diagnosis and prognosis – there is no cure.
“As a teenager, it was heart-wrenching.”
Wong subsequently withdrew into her shell, while friends and family members tried to coax her into taking various remedies.
“One that I remember was to apply a paste of cooked garlic on my skin and wrap it up with cling film. It ended up burning my skin.”
Traditional herbs similarly failed to make any difference. Eventually, Wong told her parents that she no longer wanted to be treated like a lab rat.
At college, she studied nutrition and later started on a plant-based diet. She graduated three years ago.
“I was too ill to do anything apart from staying at home to take care of my body,” she said.
It was then that she took time to conduct research on recipes that she felt would help mitigate her suffering.
It was also during this time of
self-reflection that led to a new cause – to talk publicly about her journey with psoriasis in a 23-day Project Naked campaign.
Her reflections on her Instagram account @safespace_my drew 12,100 followers. She made use of the platform to offer support and to empower those who were fighting the same battle.
Wong said she was initially afraid of what her campaign could lead to but was surprised by the show of support. This led to a new project called Safe Space.
“It began as a physical space in which everyone can talk about their pain but the Covid-19 pandemic has made it necessary to take the forum online. Today, it has followers from all over the world.
Wong’s battles have also led to a new calling – to be a holistic nutritionist. On the whole, she said it has been a healing experience.
