Quick question: What is the largest organ in the human body?
Well, if your answer is the skin, we agree! Our research on the internet (we just wanted to be extra sure!) led us to a few opposing pieces though. You could read it up but we’re not here to debate on that.
Either way, the skin is still an important body part. Even the slightest skin irritation could ruin the day for many of us. The way our skin looks also plays a major role in boosting or lowering our self-esteem.
Now, imagine living with psoriasis. In case you’re not too familiar with what that is, simply put; it’s a type of skin disease that causes a significant amount of discomfort.
When it’s hot, the sweat would lead to itchiness. When it’s cold, the skin turns dry. It is true that those with regular skin conditions go through similar situations too.
But psoriasis takes it to a different level. Well, if you can’t imagine living with that, you could probably learn a thing or two as we did through Rocyie Wong
Meet the psoriasis advocate
Rocyie has always been that pretty girl with a fun personality. But back in the day, when she was about nine years of age, the symptom she had was thought to just be a terrible case of dandruff.
“It wasn't as bad. It was just a lot of flakes on my shoulder and on my skirt or whatever,” she told Rojak Daily
when we met up with her.
About two years later, the itchiness kicked in. She would be scratching her scalp so vigorously that her scalp started to bleed and eventually, showering became a painful activity.
“ I don’t know actually how I went through that and I thought it was normal.” She thought wrong.
The discovery of her skin condition happened by chance. Someone had come over to her place to test out a scalp-examining device.
“And when they saw my scalp, they were like, ‘Oh, this is serious. And you need to get proper doctor advice on this.”
It was only five years later that she was diagnosed with psoriasis.
Understanding what psoriasis is
If you've not heard about psoriasis, it can be quite confusing.
“Psoriasis is basically a type of autoimmune condition that doesn't only affect the skin but also affects your nails and your joints. When you have it on your skin, it's red colour, it's itchy and scaly and it's dry. And sometimes when it's extremely inflamed, it can be very, very painful as well,” Rocyie said.
There are also different types of psoriasis, Rocyie told us.
“Some of them actually have pus, so it's very unpleasant to deal with. And if you have it on your nails, your nails can be deformed. It is painful. It will be very tender. And if you have it on your joints, the shape of the joints can change like having arthritis. So we call it psoriatic arthritis.”
For psoriatic arthritis patients, there is a possibility of losing the ability to move properly or even, becoming bedridden. Yes, psoriasis is more than just a skin condition.
For Rocyie, she has skin psoriasis and mild nail psoriasis. She started receiving proper treatment at 14. The red dots had also only begun to appear at this point in her lifetime.
Being a teenager who was conscious of her image (and exam results), her skin condition made her feel very self-conscious.
On whether or not she was bullied during her days growing up with psoriasis, the Sekolah Menengah Kebangsaan Aminuddin Baki Kuala Lumpur alumna cheekily stated, “Ever since I was young, I was the one who bully people”.
Well, she has always been an outgoing as well as an outspoken girl. All she wanted was just to be the cool, pretty girl. But while her friends were in the phase of experimenting with clothes and makeup, Rocyie was busy covering herself up.
Psoriasis also affected the way she cuts her hair.
“Because when you have it on your scalp, you need to apply medicine on the scalp. When you have long hair, when you apply medicine (which) is basically ointment, you will make your hair very oily.”
Shorter hair allows for easier care and maintenance as well as for hygiene purposes. Although she was able to rock the short hairdos (a pixie cut was on the list, in case you were wondering), if she had it her way, she would opt to keep her hair long.
During her school days, Rocyie's psoriasis had appeared in areas that she could still cover. It gave her the ability to carry on like others.
“I tried my best to just be a normal person, so when I was in school, I was very happy.”
But when she comes back home from school, it’s a different story.
“When I take off my shirt and look at myself in the mirror, that's when I realised —it hit me that I have this condition. And I would go home to a lot of medication, a lot of worries from my parents and a lot of itchy nights. And I would spend hours of my time applying medication on my body,” she recalled.
Countless hours were also spent at the waiting room of both private and government clinics and hospitals. In the quest to seek “a famous doctor’s consultation or finding treatments,” her precious time would also be consumed by all the travelling — interstates and abroad.
The whole situation took a toll on Rocyie’s mental energy. Hence, it’s understandable why Rocyie said, “I kind of feel like a part of my childhood was robbed away from me because of this condition.”
Speaking on the patch of psoriasis on her face, Rocyie shared with us that it had only started appearing back in 2016, during which she was still ashamed of the condition.
Naturally, she started to freak out. She tried her best to cover it up. Steroid cream, concealer and even bangs (which she successfully pulled off) were some of the ways she tried to hide her psoriasis on her forehead.
Eventually, she just couldn’t cover it anymore. As afraid as she was, she realised she had no choice but to just deal with it.
A lifetime of treatments
The 27-year-old stated that psoriasis is known to be a lifelong condition. And as of now, there is no ultimate cure.
“But there are also a lot of cases out there where somewhere halfway, it just (gets) cured by itself or that you try something and it went away.”
The causes of psoriasis continue to be a mystery.
“When the causes are unknown, the treatments are also all over the place.”
There is a wide range of treatments available though. Rocyie would know; she had gone through “too many” with some leaving her traumatised.
“When you live in Southeast Asia and when you live in a multicultural space, there are basically two main options for you. You have conventional medicine. You have traditional Chinese medicine. You have Ayurveda, which is Indian traditional medicine.
"You also have a lot of religious-based methods as well. And at the same time, you have so many natural remedies out there.”
Rocyie admitted that she is overwhelmed with suggestions from others, telling her this treatment worked for that person and that treatment worked for this person. But she stays firm with her understanding that it is not within her capabilities or anyone else either to try every treatment there is.
“To be frank, when I recall my journey since I was 14, I feel like I've been living my life as a lab rat because I'm constantly trying out new things.”
It also gets taxing as she would require at least four to six months before she could decide if a treatment works or not.
On top of that, treatments for psoriasis are costly. But despite being a chronic disease, it is not generally covered by insurance. Rocyie considers herself lucky to be able to get the treatment she needs with the financial support from her parents.
However, she feels for those who are badly affected by the condition but are unable to receive the necessary treatments or medications.
“There are so many people out there, when (the) conditions hit them, they couldn’t walk anymore. And I think when it comes to that, one of the very few options for them is actually (to) go for biologics. But biologics are so expensive. It’s a five-figure kind of treatment,” she revealed.
Bitter pills to swallow
Medication is also a tricky part. Certain medications come with side effects that are not pleasant.
Rocyie cited topical steroid withdrawal as one of them for those who grow reliant on the usage of steroids. The redness, burning and stinging of the skin are what the withdrawal could result in.
“Second thing is if you are on MTX — which is methotrexate — if you are on it long term, you might have kidney failure and you might have (a) fatty liver as well,” she related.
However, she also made it clear that in some cases, there is no other way but to be reliant on these medications.
“People shouldn't feel shameful about needing to rely on medication to function because some people, their condition; they really cannot walk without medication, so some people have no choice.”
Living a double life and coming clean
Today, Rocyie is very bold and open about her condition.
Of course, it wasn’t always like that. For a long time, she was ashamed of it.
“I think when I was 14 until 24-25, I felt that I was living a double life,” she admitted.
In fact, there was an episode in her life when she had disappeared from the radar of her everyday routine to go to India for Ayurvedic treatments.
“And when I came back from treatment, I lost so much weight (that) somebody thought I had cancer. You see, I was so shameful until the point where I didn't even have the courage to tell my friends that I have psoriasis.”
It occurred to Rocyie during the final phases of her university life that the world is her oyster and that it was the moment for her to seize every opportunity she could grab.
“But that time, my skin condition hit me the worst and I needed to stay away and just lay low for my treatment and I couldn't do anything.”
“And it's like, you have already lived most of your life feeling like a burden. And when you were supposed to go out there and create a life of your own or chase after your own dreams and goals, you couldn't. So I think I was very, very sad about that. I was very upset about that,” she further elaborated.
Rocyie also admitted that she was on the edge of falling into depression, as “I realised the drop of energy and I lost a lot of motivation to do things.”
She found herself losing the desire to even wake up because it felt to her like there was nothing for her to wake up for.
“It just felt like the world was moving forward and I was just there. I felt like a burden. I felt very useless.”
However, it was the power of wanting to just be herself that finally had her breaking out of that shell. She still wanted to carry on with the image of the confident, pretty and outspoken Rocyie that she has spent years to build.
But at the same time, she also wanted to come clean to the world about her struggles with psoriasis, which was a big part of her life that she had always tried her best to hide from others — including those close to her.
When she did decide to take a step forward by giving it a shot at a casting call, she was met with insensitive remarks.
“They told me they were not looking for a model like 'that'. I'm just like, ‘What do you mean you're not looking for a model like that?’. I got so triggered,” she told us with a laugh.
Rocyie was also made to showcase her hand and when she did, she was told that her skin was “quite serious.”
“You think I don't know that?” she reflected.
She channelled the angst she felt into the creation of a meaningful social media post. So, in April 2018, with all that rage fuelling her, before getting into the shower, she posted a naked picture of herself that revealed the parts of her skin she was always trying to cover up.
“I threw my phone on the bed because I was so nervous. I was so afraid of what people were going to say. So I showered, came out and then I picked up my phone. Then, I started crying because there were many supportive messages,” she laughed.
The outpouring of kindness also made her breathe a sigh of relief.
With tears streaming down her face, Rocyie expressed her feelings over that particular happening.
“I spent so many years of my life being afraid of being who I am. And when I finally posted a picture that I came clean to the world and the support that I received was so overwhelming. I was like, why didn't I do this earlier? You know? And that's when I decided to share my whole journey. And that's why I decided to work on Project Naked.”
She continued to say, “Why didn't I give a chance to the world to show me some kindness? Because we are always so harsh on ourselves. It took me a while to learn to be kind to myself as well.”
The family role
“Family support is the first line of support that we have for ourselves as a patient. I don't deny the fact that is very, very, very important because the reason why I was able to go through things I went through was also because of my parents,” Rocyie stated.
However, she stated, “At the same time also, the amount of stress I faced came from there as well. Because sometimes when you are in pain and discomfort yourself, it's okay because it's yourself, right? But when you see your parents in pain and suffer(ing) — you see your parents sad and in pain because of you emotionally — I think that gives you even more pain.”
Rocyie is also of the opinion that most of the time, parents are more anxious and nervous compared to the child with the skin condition.
“So, they would frantically go around and search for so many other remedies and treatments and just like expect the child to try everything. So that was kind of very stressful for me to handle. Basically, I felt like a lab rat because of them also,” she confessed.
Despite it all, her mum is her inspiration.
“My mom is a very, very strong woman and she also goes through a lot of life challenges but she always picks herself up and go on.
“And I know that one of the reasons why she's able to push through is also because of me. So I think we keep each other going, you know? I think it's pretty healthy that way.”
If you know anyone from your family or a friend who's quietly struggling with the disease, there are many things you can do.
“Try to understand the emotional challenges that the child goes through, that's the first and foremost. Second thing is treatments are important. But it's also very important for the child to have peer to peer support because when you have peer to peer support, there would be a change in experience when it comes to treatment.
"And I think the sharing of experience from that plays a big part in helping the parents to make informed decisions when it comes to choosing treatments for the child.”
Rocyie also suggested the move to go through and read up on the pros and cons and review of each treatment. The Internet has loads of them.
But the best way, according to Rocyie, is to talk to other people who have experienced the particular treatment and hear what they have to say.
Being the friendly and outgoing person that she is, Rocyie has never really had issues to forge new friendships. She loves her friends and is also convinced that her friends love her more.
Romantic relationships are tough though. She is even puzzled as to why she is still single.
“I don't know why. I'm so fabulous, but like—,” she laughed out loud, while confidently flipping her hair, before continuing, “Everybody wants to fall in love. But even for normal, healthy people, they are already dealing with their own insecurities, their body insecurity — they're not pretty enough or whatever. I have it worse even until now.”
While she may advocate for self-love and confidence daily, she admitted that she still does get panic attacks when it comes to seeing somebody.
Rocyie rocks it as a social media account manager. She knows that a nine-to-five job is not something for her. However, she acknowledges that being denied a job is a common occurrence for those suffering from such visible skin condition, as certain people have the concerns that they might not be able to carry out the job responsibilities due to their skin condition.
She is optimistic, though.
With what the pandemic had shown her in terms of the possibility of mankind adapting to new ways, Rocyie said, “The world is changing, so if you are currently feeling very stuck because of your job or you're feeling very unhappy about your job or you're feeling so much stress about your job, I think there's definitely a possibility that you can create something for yourself.”
Full time advocacy
To date, Rocyie has worked on a few different initiatives that aim to provide support and empower those who are battling skin conditions like herself.
It all started with Project Naked, a 24-day campaign where she opened up about her journey with psoriasis and how it affected her through postings on her Facebook and Instagram accounts.
Reflecting on the honest campaign, Rocyie said, “The reason why I started Project Naked was to just be myself. I think people forget how powerful that is."
"In life, with or without skin conditions, people tend to put up a mask. Well, even though they're struggling, they still pretend to be happy in front of other people. But to just be yourself — it's okay to show the world that you are struggling as well because deep down inside, everybody is struggling.
"No matter how poor or how rich you are, we all deal with problems, we all deal with heartbreaks and we all want things that we can’t have sometimes. And that is okay. It also made me realise that it applies to everybody from every single corner of the world.”
For a long time, she was held back from executing an initiative like Project Naked over the concern she had regarding the image she had built.
“I've always been this girl where people see me as, you know, ‘She's so pretty, she has really nice skin’ or like, ‘She's so outgoing, so fun’ or whatever. I think I couldn't start and I couldn't work on Project Naked because of this barrier. Like, I still want to be seen as a pretty, hot girl out there.”
Thankfully, despite taking a long time to get over that obstacle, she managed to gather the courage she needed to tell herself to, well, take the leap of faith.
“This is this. But if you share your story, you're able to create awareness. You're able to create something so amazing for people that suffer with the same condition.”
As a follow-up to Project Naked, Rocyie would go on to create Safe Space, a platform that enables those with similar struggles to come together and provide support for each other.
“We focus a lot on patient empowerment,” she stated, adding that the very first Safe Space event took place on the last day of Project Naked.
“It was very magical because it was the first time I actually come face to face, like sit down face to face and have a proper conversation with people that have the same condition,” she reminisced.
“It was so powerful in the sense where, like, we didn't have to talk about our experience but we could understand each other so well. And whenever somebody (was) sort of crying, all of us are crying as well. The sense of comfort and the sense of support that was being provided just during that first session itself was just way too powerful,” she added.
Rocyie continues to organise Safe Space events on a regular basis in Malaysia and Indonesia.
“I've also organised one time before in Singapore. But because of this pandemic, Safe Space was actually opened up to international audiences as well. We had people from (the) US, France, Russia, all over the world attending Safe Space.”
Rocyie noted that the mental health support out there is not enough to support every single chronic condition. And while psoriasis patients are the current focus for Safe Space, Rocyie hopes to one day, reach out to those with other chronic conditions too.
PSOARHIGH is one of the latest initiatives organised by Safe Space. The campaign seeks to compile stories from psoriasis warriors in Southeast Asian countries to raise awareness about the condition in the targeted nations.
Why focus specifically on the eleven countries, you ask?
“Because I realised that the stigma and discrimination people in Southeast Asia face — people with skin conditions especially — is actually way more.” She feels that the level of awareness and education here is still low.
“I want to raise awareness for psoriasis in the Southeast Asia community so that we can reduce the stigma and discrimination towards people like that (with skin condition).”
Rocyie also hopes to raise awareness for the psoriasis support group and establish a happier community. She strongly believes that professional support and peer-to-peer support are equally important.
Rocyie also established Psogood, an experimental effort where she shares about her food adventure with an emphasis on the knowledge of healthy eating.
“Currently, I am heavily plant-based. I also cut out dairy and most of the gluten, so mostly, my diet is anti-inflammatory,” she said.
It took her many years to learn and experiment with different types of diet, but she wasn’t always careful of what she consumes
“When I was younger, the doctors very clearly told me that the diet doesn't play a part and I could eat anything that I want,” she revealed.
As she grew older, she realised what she eats does affect her skin condition, so Psogood is the platform where she shares about the food she takes.
Having been able to reach out to those who face similar challenges, Rocyie said, “It makes me feel very small and big at the same time.”
She also insists that there is still a lot to be done in this never-ending journey to raise awareness about psoriasis and other skin conditions.
Her purpose in championing this cause is simple yet noble: “I don't want anybody to go through what I went through when I was younger,” citing the loneliness of going through the ups and downs of treatments as a major example.
“And because going through treatments itself is already hard, I hope that people have the support that they need going through the journey.”
Rocyie finds herself feeling very fulfilled to advocate for this cause.
“When I wake up, I wake up feeling very happy. I feel very driven. You know, I'm very proud of myself to be here today because life was very, very different just two years ago.”
If you had a bad day...
Despite her chirpy personality and how strong she may look from the outside, she also goes through days that are clouded by anxiety, worries and sadness.
Rocyie pointed out that one of the main reasons people like her feel down is due to the uncertainty of their condition.
“So today I wake up fine. What about tomorrow? I may wake up tomorrow unable to walk around because of joint pains. And because of this, we feel very hopeless. We feel very helpless,” she explained.
“As cliche as it sounds, when you have a life purpose that is bigger than yourself to chase after, I think that puts things into perspective as well,” she stated.
If there's one misconception about psoriasis that she wants to quash, it's this: psoriasis is contagious. Spoiler alert: it's not.
“Sometimes, they can look quite scary because when it's very inflamed, it's not pink colour. It's red colour. And it could bleed and there's like, pus oozing out of the surface of the skin. So, yes, it can look quite unpleasant on the eye.”
But despite its appearance, psoriasis is NOT contagious. We repeat: psoriasis is NOT contagious.
And then, there’s that issue where “people think that the reason why people have skin condition is because they don't shower properly, because of hygiene issues. It's NOT,” Rocyie affirmed.
They shower every day with soap and shampoo but that’s not where the problem lies.
Rocyie believes that we need to have more kindness and compassion toward others.
“Sometimes when we see something new or see something different, we would let our fear decide what's our action like. If you let fear be the driver, you will actually respond in a way where (it’s) like, ‘Oh, what’s that? Will I get it? You better stay away from me.’
"But when you come from a space of kindness and understanding and compassion, you would actually put yourself in the other people's shoes and empathise with what they’re going through.”
But is it okay to ask someone about their skin condition? Well, Rocyie thinks “that would be appropriate if you are coming from a space of curiosity and you want to educate yourself or you want to really know.”
What is not okay, however, is striking the questions with a condescending tone and simply, being rude.
“ I don't deal with this kind of bullsh*t now. Sorry about the language. Well, I would just walk away if a person was being rude,” she stated matter-of-factly.
Ask nicely, please.
She doesn’t have that many haters though. But she does have to deal with a lot of people who would like to sell her their products.
To her fellow warriors
We asked for Rocyie’s message to those who are going through the adversities of having a skin condition like her.
“I think we have to admit that there's a long way to go when it comes to raising awareness for skin conditions or that there's a long way to go in order for the world to change a little to cater to people like us.
"But I want to encourage them to stand up for themselves at the very least and hopefully the work that I do is able to tell them that, you know, to show them that there are so many people out there who had the same struggle and there's no shame in having a skin condition and they can wear whatever they want to and talk about what they struggle with openly.”
She also expressed her thought on how super important it is for people like her to take up the role of an advocate to raise awareness and to speak up about the skin condition.
“Sometimes we can't expect the world to reach out to us. We must reach out to the world first to explain about our condition. There is no need to be embarrassed about it because it's basically a condition where we didn't choose to have as well.
"At the very least, when you explain about your condition, you're also helping other people that have the skin condition, to do a part when it comes to raising awareness for this skin condition.”
When we asked how we can make the world a friendlier place for people like her, Rocyie blurted: “Stop staring.”
“You can stare but don't stare until so obvious. You know, like, there's two types of staring. For the first type of staring is like, okay, they are curious about what you have on your skin. But the second type of staring is like they are wondering what's wrong with you.
"We already know what's wrong with ourselves. We don't need your stare to help us realise that. It makes us feel like an alien and a weirdo, so that's not very pleasant.”
Be mindful of your staring, folks.
On the whole, Rocyie feels that the movement on body positivity in Malaysia is getting better.
“People are more open-minded when it comes to these kinds of things,” she said, but she does ask that “don't make it hard for us because it's already hard enough.”
On what psoriasis has taught her, Rocyie told us that it's growth.
“I think because of this skin condition, I have been through quite a bit of ups and downs. And when you go through pain, the growth you experience from that is actually very steep. And it gave me many, many skills I'm able to utilise right now.
"And one of the very important skills is actually empathy. I empathise a lot more now compared to previously and I have also become a more resilient person, more adaptable.”
With psoriasis, she also found a purpose, but it wasn’t a simple feat though.
“I think, to be honest, sometimes when life gives you a purpose it’s also up to you if you have the courage to take it up. When you face struggle in your life, it’s in your own hand to want to make something out of it or not.”
But she was encouraging of choosing the path to create a greater difference in the world.
She said, “Make the best out of your pain. Give your pain a purpose.”
If you are keen to know more about Rocyie’s journey and her initiatives, you can follow these accounts:
Facebook: Rocyie Wong
Facebook: Safe Space Global