Why 'disease with a thousand faces' hard to understand

Ms Ang Yeh Ray, 37, and her mother Ang Tang Hwa, 61, were both diagnosed with lupus.
Ms Ang Yeh Ray, 37, and her mother Ang Tang Hwa, 61, were both diagnosed with lupus. ST PHOTO: AZMI ATHNI FOR THE STRAITS TIMES

Lupus is known as the "disease with a thousand faces", in reference to the many ways it can manifest in different people. Yet this indeterminate nature is also why many people struggle to understand lupus.

In some sufferers, lupus can lead to poor sleep and body aches, while for others, it can cripple their major organs and land them in hospital.

"It appears as a disease that is complicated and difficult to understand," said Lupus Association (Singapore) president Irene Lim.

While the general public is more aware of lupus today, compared with 30 years ago, awareness can be improved further, said Mrs Lim, who has lupus herself.

The association still comes across many patients who are hesitant to disclose their illness to employers or co-workers. They fear that they may lose their jobs or be shunned, explained Mrs Lim.

Some patients have trouble getting a job and holding on to it because of the symptoms they suffer.

Chronic fatigue, aches and pains, as well as poor sleep are among the symptoms that can hinder good work performance.

Stress at work may also cause lupus to flare up. Patients may have to be hospitalised for long periods, which is unattractive to employers.

Ms Ang Yeh Ray, 37, had been struggling for years to find another permanent job, after she stopped working full-time as a layout artist and graphic designer because the taxing work and long hours were negatively affecting her health.

"I couldn't get full-time jobs because I had to state that I have a health condition in the job application and needed to take medical leave for check-ups," she said.

 

She had been rejected outright by potential employers and asked to take on work duties not stated in the job advertisements.

More than 20 job interviews later, Ms Ang finally managed to secure her current job as an allied educator at a primary school eight years ago, with help from a Meet-the-People Session.

"At least I feel more useful now that I'm working," she said.

Said Mrs Lim: "With better public awareness, as well as understanding and empathy from family members, friends, co-workers and employers, patients will be able to lead their lives as normally as possible, without being viewed as sickly, lazy, or inadequate."

Felicia Choo

A version of this article appeared in the print edition of The Straits Times on October 24, 2017, with the headline 'Why 'disease with a thousand faces' hard to understand'. Print Edition | Subscribe