Living with Psoriasis: This is Rocyie's Story

Psoriasis 101: An immune-mediated disease that causes raised, scaly patches on the skin due to systemic inflammation.

Introducing Rocyie: A psoriasis warrior and wellness advocate. Since 2018, she has launched a number of initiatives including Project Naked, Safe Space and PsoGood, and is now a Health Coach. This World Psoriasis Day, she shares her personal journey with psoriasis, and how she wants to use her voice for good. 

Tell us a little bit about your journey. When were you diagnosed with psoriasis, and how did you find out?

Hey guys, happy World Psoriasis Day! I think it's a good time to talk a little bit about what psoriasis is. Guess let's just get into it!

I was diagnosed with psoriasis at the age of 14. Ibelieve that I got it when I was nine, but because of the lack of education and lack of awareness. I took a few years to actually get a proper diagnosis, so that was actually a long journey.

How did I find out? I think I've always had this very bad scalp problem. After a while the itch got so bad that I started scratching it and it started to bleed. Basically I was having an open wound on the top of my whole scalp and I was losing hair as well. Then one day my parents and friend came over and they were just trying a product on me. And when they spread open my hair and looked at my scalp, they were like, okay, this is way more serious than we expected. So it is better for you to get a proper consultation from a doctor. That's how everything started.

What kind of treatments / remedies did you explore throughout the years? What’s one thing you wish you knew before starting these different treatments?

Initially, my journey started with conventional treatments. So a lot of Western medication, a lot of steroid cream, phototherapy. I was also offered immunosuppressants, which is MTX (Methotrexate), at the age of 21. I think that's when I decided to stop. And over the years I've also tried a lot of traditional medication treatments, and I am really grateful to be born in Malaysia where it’s multicultural, and comes with a lot of access to things like this as well.

It's been a journey full of ups and downs, and if you wanna understand a little bit more about my journey, I guess you can just scroll through my Instagram (@rocyie) where I share a lot about my treatment experience.

What's one thing that I wish I knew? I wish that I knew the importance of proper nutrition, and also stress and emotional management, which I teach right now. I'm a holistic nutritionist, so I teach people how to manage their skin conditions. It's been really exciting!

In addition to the physical challenges you face as a psoriasis warrior, how has psoriasis affected your mental health? How has that changed over the years? 

Not going to lie, it has been a very difficult journey, especially when I was younger as a teenager, because when you are younger, you care a lot more about how you look; you want to fit in and just want to look pretty. I mean, everybody wants to look pretty, but having a skin condition makes it so much harder. Growing up from a teenager until I reached young adulthood, it has been one of my biggest struggles, having that confidence. Some days I found it hard to get out of the house, and there were a lot of social events where I had the opportunity to meet new people but I would turn it down because I felt uncomfortable being around people and so ashamed of my skin — how it looked like, and the flakiness and the itchiness. So that was a lot to deal with along with the physical discomfort.

So how has that changed over the years? I think I've gotten a lot better because I think it's also an age thing. As you grow older, you don't really care so much about how people look at you, you just tend to really focus on what you want, and focus on building the life that you want for yourself. And also just minding my own business! Some days when my skin used to be really red, I still wore t-shirts out. Of course it felt uncomfortable, I won’t deny it, but at the very least, I think I'm at a point in my life where on my good days, I can feel comfortable wearing things that I want when going out. It doesn't happen every day —there are bad days and there are good days— so on the good days, I treasure it a lot, and on the bad days I just take the opportunity to just rest up and just recuperate at home by myself or with my close friends.

You openly share your fight against psoriasis through social media. What sparked this passion to share your story and why do you think it’s important for your story to be heard? 

I started sharing my journey back in 2018. The reason why I started sharing was because I realized it's so important to talk about skin conditions and to really destigmatize skin conditions within our Southeast Asian community, because of our cultural and also social norms. I think that was a very necessary conversation to have. And also, it's so important for us to raise awareness about skin conditions in general, it doesn't just have to be psoriasis. It is also all about any problem, like acne, stretch marks, burn marks, eczema, any sort of scars on the body.

It's all about having more representation of different appearances, different textures, different skin colours on social media so that people don't feel so weirded out or so alien because they have a different type of skin. Because growing up what you see on the magazine or on the TV are all smooth and fair skin. So people always think that smooth skin and fair skin are the benchmark of beauty.

I think that really pushed me as well because I just really wanted to be myself. I found it so hard to be myself just because of this skin condition. With me talking about it, it was actually just me trying to show this real side of me so that I can live my life as me, as honestly as I can, as openly as I can to just be myself, you know? I think in life, it's so important for us to give ourselves the permission to experience the liberation of living our truth. Just a simple sentence like “I have psoriasis” — it took me so many years to say it out. And once I did that, it was pretty amazing. 

Since opening up about your psoriasis journey, the response from the community has been overwhelming. From Project Naked, to Safe Space, PsoGood, and now a Health Coach, you’ve inspired so many with your strength, courage and vulnerability. What motivates you to continue helping others overcome their own challenges?

Yes, it has been a journey; a journey that I'm really grateful for, one that is still difficult in many ways, but the liberation itself gave me a lot of comfort and also the support from my community.

What motivates me is, because I truly understand and am able to empathize with people that are suffering in the dark, I just really want to provide the space for people to be themselves when they struggle. To give a voice to people that are afraid to speak up for themselves and to also speak up about issues that are important, which not many people are doing. I also want to encourage more honest and vulnerable interactions and connections within a community and to show people that it is really okay to show that you're struggling, and to show your imperfections. It's so important for us to share this real and genuine side of things on social media, because social media tends to be a space where people just share about the better side of life.

There should be a balance to tell people that they're not alone, and that they're not dealing with challenges alone. I think that really breaks down a lot of barriers among people on social media, to reduce isolation, reduce social judgment, and essentially make people feel like they’re not alone. I think that is really, really important.

What does it mean to feel beautiful in your own skin?

For me, beauty is all about being ourselves, being able to appreciate what we are — for our strengths, as well as the weaknesses, for the beautiful sides of us as well as the not so beautiful sides of us, and the ability, capability, and liberation to live in our truth.