“Kenapa semakin banyak tompok-tompok Amirul? Tak jumpa doktor ke?”
“Macam mana nak cari girlfriend kalau kulit Amirul macam ni?”
“Are you sure you can eat kuah kacang? Kacang can make your skin worse.”
Ever since I was diagnosed with psoriasis, I dread family gatherings.
Raya last year was the worst. All anyone wanted to talk about at every open house I visited, was my skin.
I got bombarded with never-ending questions, and everyone wanted to give me advice based on their own experience of struggling with non-psoriasis related skin problems. It was exhausting to deal with.
I still remember my diagnosis clearly. It happened exactly a year ago. When the doctor told me that I have psoriasis and there was no cure, my mind just went blank. I didn’t understand what it meant. I was only 22. I was just about to kick start my life and suddenly I got diagnosed with a skin condition that might change everything. It was very scary.
My psoriasis developed at the beginning of my second year of university. It was really stressful because I was studying film and attending a theatre training programme at the same time. I was so consumed with work that I didn’t allow myself to rest. I didn’t take care of myself enough.
It all happened very gradually. At first I thought it was an allergic reaction. It started with a small patch on my inner elbow and it slowly spread to my back, stomach and leg. It felt like mosquito bites in the beginning, but then it became red, angry and pulsing. It was the kind of itch that was painful and burning.
I used to cover my mouth while I showered to muffle my screams. Sometimes the water would already be running, and I would just stand outside the bathroom for 15 minutes – buying extra time, wishing that I didn’t have to go through the excruciating pain. It always felt like I was like bathing under a rain of acid.
At one point, it got really bad. I started losing a lot of sleep because I would be up scratching all night. I had to change my bedsheets all the time because of all the blood and puss. It was very uncomfortable for me to sleep with all the hard, cracking, and scaly skin.
I would scratch so much during auditions, presentations and interviews that people would stare at me. Sometimes the open scars would start bleeding and it would make me self-conscious. Everywhere I went, I would leave a trail of skin behind me. It became a trait that I was known for, and that is not how I want to be defined.
It’s difficult to deal with having very visible scars on my skin. Wherever I go, no matter what I wear or how well I cover up, people can still see my scars. I used to cover up a lot more, but I stopped doing that now. I want to be braver with my body and prioritise my comfort instead of worrying about what other people think. But sometimes it’s still hard to not let it affect me – especially when people stare and ask annoying questions like, ‘Is it contagious?’
Raya this year was very different – in a good and bad way. Staying in quarantine with my family limited our plans. We didn’t get to visit many of our relatives. But on the plus side, that also meant that I had to deal with less people scrutinising my skin.
It’s been a difficult journey, but my relationship with my body is definitely getting better. I’m still working on regaining my confidence, but I have to say that psoriasis has definitely helped me become more human. I’ve learnt about empathy and the importance to be kind to myself and to others. And I know how to take better care of my physical, emotional and mental health. I really have my family members and close friends to thank. They have always been very understanding, open and nonjudgemental. If it wasn’t for them, I wouldn’t be who I am today.”