Sunday, 21 August 2011

Interview with the Lupus Patient

From the very start of the interview session, Chee Siew Lian has made it very clear to me that she does not want any pity from me or anyone else.

Sitting in front of me is a petite and poised woman in her prime. Her skin is fair and her face is lightly sprinkled with freckles.

Siew Lian is known to her friends and family as a warm and open individual. Tenacious and sometimes stubborn, she has made it her one of her life missions to advocate for the cause of Lupus patients. This crusade is made personal by the fact that she is herself a Lupus sufferer.

I began the interview with a rather simple question that has been asked too often: what exactly is Lupus?

“Lupus, also known as Systemic Lupus Erythematosus (SLE), is essentially an autoimmune disease where the immune system of the body goes into an overdrive and starts to mistakenly attack the healthy body organs or parts,” explained Siew Lian.

“The odd thing about Lupus is that no one knows for sure what really causes it. And unlike most other diseases, Lupus is incurable and once a patient is diagnosed with it, it is for life.”

Uh oh, I thought to myself.  Just five minutes into the interview and whatever this Lupus thing is, it is scary enough as it is.

Seeing as I was still confused about the exact definition of what Lupus disease really is, Siew Lian tried to explain it to me in an unorthodox approach. 

“Er, I’m sure you know what AIDS?” she asked.

Acquired immune deficiency syndrome? Of course I do. Embarrassingly, it’s only one of the few things I can still remember from my Form 5 Biology education.

“Well, Lupus is the complete opposite of it. When somebody has AIDS, his or her immune system is weak and, therefore, can easily be infected by other minor viruses. The HIV virus that causes AIDS is also transmittable, as you know. Lupus patients, on the other hand, have an overactive immune system and the disease is not transmittable. Does that clear things up?”

Alas, the light bulb above my head lit up.

I daresay that was a brilliant comparison.  Ten points to Gryffindor.

Siew Lian also provided me additional facts about the disease.

“Ninety percent of Lupus patients are actually women. Furthermore, doctors tend to initially misdiagnosed Lupus patients because, well, let’s say if your kidneys are failing, it is uncommon for doctors to immediately think, ‘Oh, it might be Lupus.’ They would have to run several tests first and this takes time,” she informed.

There exist several methods of treatment available for Lupus patients to inhibit their immune system from causing further damage, and one of the more effective and less painful ways of doing so is through the oral consumption of steroids.

As a matter of fact, Siew Lian tells me that she is currently on steroids. Looking at her small-boned and thin stature, I’ll have to say she is not quite what I would imagine when the words ‘steroid user’ comes to mind.

Unfortunately, the various treatments to curb Lupus disease often works by lowering the mechanism of the immune system, thus, leaving patients exposed and more susceptible to other forms of illnesses.

As we proceeded with the interview, I then moved on to the question of discrimination: what are the kinds of discrimination faced by Lupus patients?

Siew Lian sighed dismissively upon hearing my question.

“Yes, it is difficult to live with this disease, but us Lupus patients generally do not face any form of discrimination based on our condition. In fact, I have female Lupus patients coming to me to complain about how they are facing ‘reverse discrimination’ from their husbands!” laughed Siew Lian.

She explained to me how certain Lupus patients who are housewives ranted to her about their ‘dilemma’ on having a hard time convincing their husbands to believe that they are indeed to tired or fatigued to complete house chores as a result of Lupus, merely because they look so normal and ‘unsick’.

“Nevertheless, there are indeed some slight forms of discrimination faced by Lupus patients,” she clarified.

At the workplace, employees should be open and completely honest about their illness to their bosses to avoid misunderstanding. On the other hand, employers would need to learn to be more empathetic of workers with Lupus disease.

Siew Lian has seen past cases where Lupus patients have missed their monthly check-up because they weren’t allowed extra time-off from work and this has resulted in the sudden steep deterioration of their health.

She also advices Lupus patients to avoid direct sunlight and load up on the SPF.

At this point during the interview, she spontaneously started offering me free umbrellas and sunscreen lotions. I politely rejected her offer, but shall any of you need sunscreens and umbrellas; you know who to look for.

Living with a Lupus condition is hardly a walk in the park, but Siew Lian usually urges patients to be both brave and patient in dealing with the disease.

“Yes, it’s tough, but it’s like that lah. You’ll just have to learn to deal with it,” she spoke in a nonchalant manner.

It was this gritty and positive attitude of hers that has made Aunty Ching Ching chose her as one of the five women of perseverance.

I picked up my voice recorder and turned it off. The interview was officially over.

We went on to chat about the weather and a thousand other things under the sun. That is, until the all-important question of lunch sprung up.

“Hey, what’s for lunch? Oh! Tell you what; why not Aunty Ching Ching and I go out and get some pizzas for the three of us. Do you prefer chicken or beef?” she asked.

I was nodding my head furiously even before she could finish her sentence.

I may have just met her an hour ago, but I’m liking Siew Lian already.

Interview by Nigel Lim Zhi Xin

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