Cover Rocyie Wong (Photo: Michelle Chua)
Rocyie Wong (Photo: Michelle Chua)
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The certified nutritionist and founder of Pso Good and Safe Space platforms on empowering patients with this lifelong condition and how mindset plays a huge factor in healing oneself
The idea to create a wellbeing programme for psoriasis patients took root when Rocyie Wong decided to officially begin her journey to holistic healing for her psoriasis, after more than a decade of suffering from increasingly severe bouts of inflammatory reactions, and little to no progress with conventional treatments.
Much like how she made her official social media debut on Instagram with the life-changing post that showed her bared skin, Wong was led by a question she asked herself years ago, frustrated, and tired of being held back by her chronic condition: What can I do for me? How can I heal from this? And the key components to healing oneself, she reveals, in the context of living with psoriasis, is about how to love yourself enough, so that you can make the best decisions for your body today and the days to come.
Related: Rocyie Wong and 2 other women on self-acceptance amidst rejection
However, with a life-long, incurable disease like psoriasis, Wong knew intimately that loving yourself was easier said than done.
“As a patient myself, knowing what I know today and having gone through more than a decade of experimenting with all types of treatments—both conventional and alternative—I needed to choose what was best for myself by being able to make informed decisions.”
Present medical practices, Wong explains, were still one-sided in the sense that patients are told what to do and what treatments they should take instead of starting a discourse with their doctors. Which is why, often more than not, patients may unknowingly suffer from acute side effects or drug withdrawals. When they consult their doctors, some patients face medical gaslighting, intentional or otherwise, in which their worries about the treatments they’re taking are dismissed and that it wasn’t the treatment that was causing them problems.
Above Photo: Rocyie Wong/Facebook
Photo: Rocyie Wong/Facebook
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In most cases, psoriasis isn’t curable and is a progressive disease that needed constant remedy; from having limited resources on understanding the disease, to conventional treatments that may be harmful to the patient in the long run, and the exorbitant fees one had to contend with in order to afford the treatments, psoriasis patients would feel isolated and alone, unable to seek help from others without proper support.
In most cases, psoriasis isn’t curable and is a progressive disease that needed constant remedy; from having limited resources on understanding the disease, to conventional treatments that may be harmful to the patient in the long run, and the exorbitant fees one had to contend with in order to afford the treatments, psoriasis patients would feel isolated and alone, unable to seek help from others without proper support.
Take topical treatments like steroid creams or oral steroids for example: in the long run, if it stops working for the patient, the patient can, in rare cases, either suffer from what is commonly known as Topical Steroid Withdrawal (TSW), or opt for phototherapy, which are controlled UV rays that help calm the inflammation of the skin by encouraging its biological process of renewing itself.
However, due to prolonged exposure to UV rays, even in a controlled environment, patients can suffer from hyperpigmentation, skin cancer and premature ageing. If those don’t work, patients are then prescribed with immunosuppressants called methotrexate, which suppresses one’s immune system to keep the psoriasis under control but causes damage to the liver and kidneys.
Above Photo: Michelle Chua
Photo: Michelle Chua
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I want people to be able to achieve the best quality of life they can, just like I have.
“Imagine being prescribed those drugs at 21,” Wong says. “That was what happened to me, and I was frightened. I didn’t want to reach 50 and replace my kidneys or my liver. It was then when I decided that conventional treatments weren’t for me.
"I’m not trying to demonise the treatments because while they do work to a certain extent, my issue with [the healthcare system] is that you don’t empower your patients by letting them have the resources to make informed decisions for themselves. Because if I knew about the side effects and the withdrawal symptoms [of the steroids I was taking], I would have thought twice before getting treated," she adds.
"While I’m lucky that I hadn’t suffered something as severe as TSW, there were periods when I couldn’t get out from bed, where every waking moment hurt. I was just so tired about everything and felt so much like a burden. Knowing that there are other people out there suffering just like I was, or who had it worse than I do, is why I do this.”
Above Photo: Vaneesha Krishnasamy
Photo: Vaneesha Krishnasamy
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With a following of 40,000 strong across both her social media platforms, Pso Good and Safe Space, Wong built these communities to uplift psoriasis patients.
Realising that patient empowerment and nutrition were aspects of psoriasis recovery that haven’t been addressed enough after attending as an ambassador at the International Federation of Psoriasis Associations in Italy, Wong wanted to highlight the importance of understanding nutritional intake and community building with her platforms.
“We always have these big conversations about how to best help patients when it comes to mental health, but there isn’t enough support for patient empowerment because they’re not thinking from the patient’s perspective," she says.
"Profit is the critical driver for treatments, and while I understand it to a certain extent, pharmaceutical companies should at the very least to give back to society by building communities, make nutritional knowledge accessible and promote safe practices when it comes to psoriasis treatments so that patients can better heal themselves. Be it mentally and physically, I want people to be able to achieve the best quality of life they can, just like I have.”
Usually found at home and one with her couch, Koy Yi would either crack open a good book or game in her spare time to wind down after a long day. She also loves to scour art conventions and book fairs alike when she's able, collecting art books of all regions to gain inspiration for her own illustrations. With a keen interest in people and the stories they tell, she enjoys a good talk and a good laugh (preferably over food). Follow her on her Instagram @peiyi57.
