Don't be fooled by her appearance -- this 35-year-old woman suffers from a painful disease

Hariz Baharudin
The New Paper
Sun, Nov 27, 2016

At first glance, it is hard to believe Miss Sherry Soon suffers from an auto-immune disease.

"I am blessed to look healthy because then people treat me normally," says the 35-year-old learning specialist.

"But it can impede their understanding of my condition too. There is a stereotype."

Miss Soon, one of the books in the Human Library event last month, has vasculitis - a condition that causes blood vessels to become inflamed, temporarily affecting the nerves.

She discovered this condition at 20, when she woke up one day and suddenly lost control of one of her feet.

Says Miss Soon: "My foot fell, I could not lift it up because the nerve was impacted."

She eventually regained control but losing mobility of her legs has become a regular occurrence.

Her condition also causes her to develop ulcers, which she says can be very painful.

"There is no cure, and the condition causes remissions and flares in my blood vessels, which cause ulcers from time to time.

"I am always on long-term medication," she says.

Since vasculitis does not affect her outward appearance, Miss Soon says the severity of her condition can be misunderstood. And the effects of these misconceptions run deep.


"On the outside, I look okay but there are days where I cannot work or do physical things because my skin breaks down and it is painful to stand or walk for long periods," adds Miss Soon.

In the past, her employers have failed to understand why she might not be able to perform certain tasks.

Some of her personal relationships have been affected because there are days where she cannot make it for social gatherings, especially if they are in places that require a lot of walking.

"When it is bad, I am forced to be at home or hospital-bound for months on end, and people might not understand why," she says.

During her spare time, Miss Soon runs a support group for people with auto-immune diseases, which she started three years ago to spread awareness.

The same motivation spurred Miss Soon to join the Human Library.

She originally intended to be a participant but subsequently offered her perspective as a book.

"I have always been wanting to spread awareness on auto-immune conditions on a large scale, and it was a good platform to do it," she says.

While the concept of being "read" by complete strangers does seem unnerving, Miss Soon says the Human Library was a "great experience".

"It was because the whole conversation was centered on my condition and that gave it much more focus, I was happy to take any questions," she says.

"But of course, it was a bit tiring to talk about myself for 30 minutes. Still, I was more than happy to share."

The New Paper

Get The New Paper for more stories.