“Psoriasis is the shits,” Kim Kardashian, a long time psoriasis sufferer shared over Snapchat. Vocal about her battle with the chronic autoimmune disease, Kardashian opened up in a relatable moment, saying, “I’m always hoping for a cure, of course, but in the meantime, I’m just learning to accept it as part of who I am.”
A painful, genetic disease that manifests in the skin, psoriasis often appears as red, scaly patches that itch and bleed. It is one of the top 10 most common skin diseases seen at Singapore’s National Skin Centre while the Malaysia Psoriasis Registry reports 21,000 psoriasis patients, with actual figures believed to be at 500,000.
With up to 90 per cent of the body of sufferers susceptible to red and itchy flare ups, psoriasis is often misdiagnosed as rash, ringworm or eczema.
Dr Oleg Chestnov from the noncommunicable diseases and mental health division of the World Health Organisation describes psoriasis as, “a common, chronic, noncommunicable skin disease, with no clear cause or cure. The negative impact of this condition on people’s lives can be immense.” Affecting people of all ages, and in all countries, WHO estimates that there are at least 100 million individuals affected worldwide. Ultimately, as no cure exists for psoriasis sufferers, it’s about pain management. Psoriasis also takes a toll not only on sufferers who bear the brunt of the physical, psychological, and social burden of the condition, but carers, partners, and parents. This systemic inflammation can also lead to psoriatic arthritis including painful, stiff, and swollen joints and ankylosing spondylitis.
Closer to home, 27-year-old Malaysian psoriasis advocate, Rocyie Wong was first diagnosed with psoriasis at the age of 14, but believes that she developed it at the age of 9. “Psoriasis is essentially a type of autoimmune condition that manifests not only on the skin, but also the nails and the joints. The severity varies according to individual, it ranges from just a few dots on the skin to being bed-ridden due to inflamed joints. Ouch, I know.”
Wong who uses Instagram to highlight the importance of psoriasis awareness and body image says that contrary to popular belief, the heat and humidity in Southeast Asia helps her manage her condition, to which there is no cure. “I believe that the stability and humidity in Southeast Asia actually makes it easier to manage psoriasis,” says Wong. “Our skin tends to dry out and flakes a lot so the moisture in the air actually makes it better. However, for some people, the cold weather calms down the skin a lot, though generally the extreme cold and dry weather does more harm than good.”
Wong shares that the most common triggers that cause psoriasis flare-ups include, “stress, medication, diet and alcohol. When my skin flares up, fasting usually helps to speed up the healing process, and of course coupled with an anti-inflammatory diet. Oh and sea salt bath helps a whole lot!”
Like many sufferers of psoriasis, Wong shares that the battle is beyond skin deep, noting that there is a challenging psychological aspect to the condition. “It is definitely the day-to-day battle with anxiety while performing any normal tasks really.” If you’ve ever felt social anxiety at the thought of mingling in groups or meeting new people, for some psoriasis suffers, facing the world requires nothing less than buckets of courage and vulnerability. “Sometimes even meeting new people can be an extremely daunting experience due to the visibility of this condition and the need to explain to people that it is in fact, not contagious. It also took me a long while to truly accept my identity as a person living with psoriasis, self-love and self-compassion can be a huge struggle too.”
While Wong says that it’s “human nature to be afraid of things that we do not understand”, most of the time the onus is on her to “break the ice with a warm smile so I seem more approachable and I will explain to them about the condition. Mainly, I mention that it is not contagious, because that’s what makes people afraid. It gets tiring after a while though so someday I do prefer to just head out with a cap to cover up.”
When self-doubt creeps in or she finds her confidence shaken, Wong says: “The habit of prioritising my mission and purpose over my own ego really put things into perspective. It is always a good reminder that we are just a vessel, and that life is really short hence it’s best to not leave any regrets. So I guess my self-love mantra is really just this simple reminder of how fleeting life truly is. I used to not go out just cause I wanted to hide from the world. But eventually I slowly learnt to rise above my condition and not let it stop me from living. I believe that resilience is built when all these small decisions are made and when we gently force ourselves to take mini steps outside our comfort zone.”
Her journey living with psoriasis has taught her much about beauty, as she draws on the Japanese art of kintsugi or golden art of repair where broken vessels are restored with gold, becoming even more precious than before. “Kintsugi is an ancient Japanese art of mending the cracked pottery with gold. Many women seem to care a lot about scars and marks on their skin, but I would like to think that those scars gave us a story to tell, enriching our lives in their own unique ways.”
“If we wish for other people to see us beyond our skin, we first have to do so with ourselves,” she rationalises. “It is truly liberating when we detach the definition of beauty from purely just appearance. I have learnt that beauty is never about our skin texture or colour, how tall we are, what we own or how we look—it is the way we love, the way we live, and the way we impact the world. It is the person we are, the books we read and the work that we do.”
As all-consuming as managing psoriasis is, Wong says it’s vital to self-care. “A morning jog in the park and a good movie at night, spending some quality time with myself is one of the most important things I do to recharge. Favourite soul-nurturing products include a well-scented organic candle paired with a good book.”
“With so much going on in the world right now, it’s always a better approach to seek to understand instead of letting fear dictate what our actions and thoughts are. I believe that more compassion and understanding would do us so much good.”
There. Proof that the only thing contagious about Rocyie is her positivity. Time to stop the rash judgements about psoriasis, and give sufferers the support they deserve.
You are not alone. For psoriasis support in Singapore, visit the Psoriasis Association of Singapore. For support in Malaysia, visit Persatuan Psoriasis Malaysia (Psoriasis Association Of Malaysia).
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