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[PSORIASIS] came into my life 33 years ago as an odd stranger.  Because of it, I was told I was dirty and hadn’t rinsed the shampoo from my hair well enough.  Later, it was assumed that a particular 2-in-1 shampoo was the culprit for my shedding skin or dandruff.  

Kids on the bus and at school would whisper loudly while pointing, “Eee…kutu!” while moving away from me.  I scrubbed and rinsed as much as I could bear the pain, but I remained dirty.  

Then it spread to my ears and I was convinced that my ears would fall off one day.  I began to learn how to lip read thinking that I would become deaf in my teens.  My father was convinced that I was dirty, so he poured betadine into my ears and around it.  I remember screaming and hopping about as my ears burned hot with pain.

This continued till I was 15 when I could no longer hide the angry red spots that appeared all over my arms and legs. My forehead had a red scaly patch that looked like the map of Russia and my bangs were useless at covering it.  That was when I was finally introduced to the stranger who had been squatting on my body for 5 years. 

“You have psoriasis,” said the doctor.  I could barely make out what he said because I was still overcome by shock after the full physical examination he gave me.  

The vaginal inspection left me raw and in fear that something bad had happened.  My mother thought something was wrong with my liver because she heard it as “cirrhosis”.  I was given tubs and tubs of ointment to be applied on my body.  I couldn’t reach the spots all over my back, so I asked my mother to help me.  

She applied the topical steroids on my back, and told me in a horrified voice, “I’m not doing this again.  I can’t stand this kind of stuff. Learn to do it yourself.”  Learn I did; it wasn’t just painful to me but it pained and troubled my mother to see my psoriasis out in the open.

Now after 33 years with my psoriasis, I can say that I have seen different aspects of it and me.  I have tried all sorts of medication recommended by all sorts of people, from dear friends to total strangers.

Natural therapy left me in years of detox or healing crisis; the phrase red as a lobster was not enough to describe how I looked.  I avoided mirrors as much as possible, even smashing one to pieces when I saw the monster in it.  

I spent thousands trying to heal only to have the cure elude me and the ones who benefited were sellers of the cure.  I didn’t blame them, I blamed me.  I have seen my psoriasis at its worst and at its best, but like an unwelcome guest, it didn’t want to depart.  

My doctors have told me not to expect a total cure, but to be prepared to live with some of it at least for the rest of my life.  I accept that in my mind, but deep in my heart I still get excited when someone tells me that a certain lotion, drink, drug or treatment will cure me.  That’s when the battle between the mind and heart begins.

Over the decades I have seen people around me become kinder and more informed about my condition.  Education and awareness has proved to be effective and I really hope any 10 year old out there now isn’t treated the way I was.  I have been shunned, disgraced, even spat on for having my condition.  I don’t blame them.  I couldn’t even accept myself, so how could I expect others to show me compassion?  

Thankfully, I have met many who have shown more kindness to me than I ever did to myself.  Instead of blaming me, they empathised. They accepted and understood the person under the red and scaly.

These are the ones who saw me as human even though I thought I looked like a monster.  Even as I deteriorated and developed psoriatic arthritis, with deformed fingers and peculiar gait, these people saw the person I was inside.

Psoriasis, you have made me desperate.  You have made me poor.  You stripped me off my dreams and chained me down.  You taught me pain and slow suffering.  But you also taught me resilience and showed me how the inner person counts more.  

You showed humans to be cruel, but there are many who have been wonderfully kind too.  Thanks to you, I know who is true and who is false.  When you were harsh with me, many dedicated doctors and healthcare workers helped me deal with you.  

I have been a great beneficiary of the healthcare system and I have personally experienced the upgrades in the quality of treatment over the years.  There is a lot more dignity and gentle care nowadays.  Being in hospital repeatedly has allowed me to witness the pain and endurance of others battling all sorts of disease and hardship.

Psoriasis, you have taught me to empathise.

I am no psoriasis hero or warrior.  I just live with it.  I can’t tame it much, it has a mind of its own.  Yet, one thing I refuse is to give it ownership.  It may stay with me all my life, but it is not the boss of me.  I will be happy, I will be productive and I will have dreams. 

With the help of many family, friends and healthcare professionals (especially in Queen Elizabeth Hospital), I have a life.  If you’ve just gotten to know psoriasis in your life, just know you’re not alone.  

If psoriasis has miraculously left you, I am overjoyed for you.  But for all those still struggling, I feel you.  Whether it’s just a tiny spot or a head-to-toe affliction, we bear the mark of psoriasis and all that comes with it.

It has been painful too for my family to see me play host to psoriasis over the years.  It creates discord or rifts among frustrated family members which just adds to the already stressful condition. While psoriasis stubbornly refuses to move out, know that you are more than your psoriasis.  Just as you need to learn about how it affects you, your family will need time to learn and accept the realities of psoriasis.  

Let’s all heal together. 

Sarah has always struggled with her autoimmune conditions. Since moving to Sabah 7 years ago, however, she acknowledges that she has benefitted “from the less polluted environment and relatively stress-free lifestyle” in Papar where she presently lives. She is currently receiving treatment for psoriasis at the Dermatology Department at Queen Elizabeth Hospital 1.