Wednesday, September 23

AIDS patient recalls ‘long and bitter’ journey

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KOTA KINABALU: In 1996, Kota Kinabalu-born Julius (not his real name) discovered a bitter truth while  working in Singapore.

As part of the requirements for the renewal of his work permit, Julius had to undergo a medical checkup.

Then the ‘bombshell’ came. He was diagnosed with HIV.

Upon the discovery, Julius had to return to Malaysia as his work permit was not renewed.

Before leaving Singapore, he received counselling and was referred to the Community Development Council (CDC) which gave him a letter to seek treatment at Sultanah Aminah Hospital in Johor Baharu.

At the hospital, the senior physician who examined Julius advised him to get treatment.

The treatment was to cost him RM200.

As Julius did not have the money then, he told the nurses that he would return in a week’s time.

However, the response he received made him disappointed and dismayed.

“You have HIV and you don’t want to be treated?” Julius was taken aback and hurt. He left and never returned.

No treatment

Julius went to Petaling Jaya and found a job but he did not seek treatment.

As the years passed and without any signs and symptoms, Julius assumed that the virus had gone away.

In 2003, Julius returned to Sabah.

Six months later, he came down with high fever and also developed a skin disease. He went to the hospital to seek treatment but failed to disclose his actual medical history.

An x-ray showed that his lungs were infected.

The doctor treating him suspected tuberculosis and prescribed the medication.

He was ill and bedridden for four months before a cousin sent him to the hospital where he was warded.

It was only after some time that one of the doctors commented on his skin disease and advised that he should take a HIV test.

“I agreed as I was sure I did not have HIV anymore. Two weeks later the result came. I had to accept that I was still HIV-positive.”

Isolation, more discrimination and despair

The backlash came within 24 hours. Another cousin whom he had confided had unwittingly informed his friends about the HIV and from then on, no one visited him.

“I was isolated in a room with an attached bathroom and not allowed to use the hospital’s utensils. The staff gave me pre-pack food. Whenever the staff came to take my temperature, they would be fully dressed in surgical attire complete with masks and gloves. I could feel their fear and repulsion.

“But that did not hurt me as much as compared to what my cousin had told me that I had caused him and his family problems as they were required to take blood tests for HIV.”

Julius was later discharged from hospital and he went back to his parents’ hometown where he owned a piece of land.

A neighbour had built a ‘kongsi’ on the land and allowed him to stay in one of the rooms.

One day, the neighbour asked Julius to leave.

He found out about the HIV and was afraid that if his workers came to know about it, they would not want to stay there any more.

“The village community development and security committee (JKKK) chairman also came and advised me to leave. I replied that he cannot chase me away if I wished to live on my own property.”

With financial help from his sister, Julius had a small house built for himself.

“My house did not have electricity. It only had a bedroom, bathroom and kitchen. A cousin who had a sundry shop would deliver provisions to my house. I was living in seclusion, afraid of the stigma and would go out only once a week to buy fish or meat at the market.”

However, Julius did not give up on life. Three years ago, he moved back to the state capital after getting assistance from Queen Elizabeth Hospital’s welfare department to withdraw RM40,000 of his EPF contributions.

With the amount, he started life anew and opened a photocopy outlet.

Volunteer

Julius is now active in the Hospital Peer Support Programme as a volunteer after undergoing training through sponsorship by the Malaysian AIDS Council.

His role as a volunteer is to offer moral support to HIV patients who had yet to come to terms with reality.

“When people find out they have HIV, they get very depressed and  refuse to accept the fact. Our job is to help them during this period, assure them that it is not the end of everything, that they can live normally.

“I also want to say to those who do not have the disease. Please don’t fear us. Please understand that you don’t get infected with HIV just by being near us.” — Bernama