From todayonline.com
PETALING JAYA — Living with a chronic condition is tough, and even more so when that condition carries the weight of social stigma with it.
Ms Marsitah Mansor, 36, has been battling psoriasis for nearly nine years and has faced several challenges throughout her journey.
One of the most difficult hurdles she had to overcome was social stigma in the workplace and her personal life. The autoimmune disease, which typically manifests in red and inflamed skin, was so severe that Ms Marsitah had to keep a personal vacuum cleaner by her desk as her skin would flake off as she worked.
In an interview with Malay Mail, she recalled an incident where she sat down at a meeting table, only to have everyone else sit across from her as they were under the false impression that psoriasis is contagious.
“There was only me sitting at one side and everyone else sat in front of me. At that time, I was so sad and felt a lot of pain inside. I was trying my best to explain that psoriasis is not contagious but it was not enough,” said Ms Marsitah.
The social stigma was so overwhelming that Ms Marsitah switched jobs four years ago because she could no longer bear the way people treated her at work.
Her self-esteem was also badly affected as the psoriasis drew unwelcome stares and questions from other people.
“I could feel strangers staring at me and it felt like they were thinking, ‘What happened to this girl?’
“I also stopped visiting my relatives’ homes because I was very defensive about the way I looked and their perceptions of my disease.
“I also stopped visiting my relatives’ homes because I was very defensive about the way I looked and their perceptions of my disease.
“My relationship with my husband was also affected as he is a seafarer and is often away from home, but whenever he came back, he saw my condition getting worse and worse.”
Marsitah Mansor via Malay Mail. The social stigma caused Marsitah to leave her old job as her psoriasis continued to get worse
COMING TO TERMS WITH PSORIASIS
Ms Marsitah said her skin first became inflamed when she was five months into her first pregnancy in 2012. It started with a small circle of irritated skin around her belly button which eventually spread to other parts of her body.
The condition came as a big shock to Ms Marsitah as she had never faced any skin problems in her life up until then.
She consulted her obstetrician about the problem and was told that the inflammation was caused by a hormonal issue and would clear up once she gave birth.
“That was the first thought when I started having this disease. I just went with it because I thought that the inflamed skin would go away after my pregnancy. At that time, I didn’t take any medicine or creams to reduce the inflammation,” said Ms Marsitah.
Her condition gradually deteriorated and she began developing inverse psoriasis, which causes red and inflamed lesions in the body’s skin folds.
While she couldn’t put a name to the disease at the time, seeing her late father-in-law living with psoriasis helped Ms Marsitah find temporary relief as he offered to lend her his creams to alleviate her condition.
It worked for a while but Ms Marsitah’s condition eventually worsened during her second pregnancy in 2014. Her inverse psoriasis was so severe that it prevented her from leaving the house and playing sports as the skin lesions were too painful, especially in Malaysia’s hot and humid climate.
Ms Marsitah also developed plaque psoriasis on her scalp which makes it harder for her to wear her hijab comfortably.
THE TURNING POINT
It took Ms Marsitah five years to sum up the courage to see a specialist for her psoriasis and one of her biggest regrets is not seeking professional treatment sooner.
In 2017, the psoriasis covered 95 per cent of her skin and it was impossible to tell what her original skin colour was due to the widespread inflammation over her body.
The inflammation on her scalp was so bad that she was forced to shave off her hair as well.
“I had started getting pustular psoriasis and I even had to shave my head for a year because the psoriasis on my head was too painful. My self-esteem plummeted and the psoriasis began showing up on parts of my body I couldn’t hide, like my face and hands.”
Ms Marsitah initially took steroids to control her condition and started taking regular biologic injections in 2018, a form of treatment that has started to become more accessible in Malaysia in recent years.
Her psoriasis is now close to 95 per cent clear and she currently works at a company that is supportive of her situation.
“I have a great boss who’s very understanding and a good team who knows about my condition. Once, my psoriasis was so bad that I couldn’t even walk and they told me that I can just work in the office for a week and once I feel better, I can go out to settle our work tasks again.
“The environment is much more positive and I’m very thankful.”
STAYING AWAY FROM FALSE REMEDIES
As time went on, Ms Marsitah’s family also learned more about the problems she was facing and she’s grateful to have them as a strong support network as she deals with her disease.
She advised those living with psoriasis to not waste money on snake oil products and opened up about her experience of using such items as well.
Being in denial over her psoriasis at the beginning was a big factor that led her to spend a huge sum of money on “miracle products” promising a cure for her condition.
“I spent so much on alternative medicine and supplements because I was desperate to find a cure. Back then, I couldn’t accept that I had psoriasis and it was not easy for me to deal with the truth because I was born with healthy skin. But I strongly advise people to seek specialist advice and not to rely on supplements that make empty promises.”
Advances in technology have made it possible to provide a tailored approach to treating psoriasis through biologics.
Sunway Medical Centre dermatologist Dr Bong Jan Ling said it’s important for people living with psoriasis to seek medical advice early as the condition can be more difficult to deal with if left untreated for long periods.
“Especially for those in the category of severe psoriasis, the disease can ruin their life. Mainly, it’s not life-threatening but the quality of life (is affected) and it has significant implications.
“Skin diseases come with a great degree of stigma as well, especially if the skin is flaky, shedding, and red,” Dr Bong told Malay Mail.
Dr Bong added that Ms Marsitah’s story is important because it highlights the need to combat social stigma and dispel harmful myths about psoriasis which can lead to ostracisation.
Medical treatments backed by science are the best ways to control psoriasis and Dr Bong said it’s important for patients to know that they can still lead fulfilling lives despite their condition.
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