Saturday, June 6

Life through the eyes of an HIV patient

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First of a two-part series

IT was a radical change for Abdul (name has been changed) — one he didn’t expect, yet must accept.

The 35-year-old has been living with HIV (human immunodeficiency virus) for about eight years and along the way, has lost some of his best friends.

He still wonders how he has managed to survive until today.

Abdul understands those similarly afflicted often suffer from depression. As such, he is trying to do good, lead a more meaningful life, and devote his time to helping others.

He still feels optimistic about life despite his condition.

The Red Ribbon symbolises solidarity among HIV-AIDS patients.

“I just want to live a normal life. I know this isn’t a death sentence. People living with HIV can still go anywhere and lead a life that is normal and with optimism. Their ordeal ought to make them better people and more careful,” he said.

Wild lifestyle

As an adolescent, Abdul loved to enjoy himself. At 19, he led what he called a “wild lifestyle”. He was then in Sabah to further his studies.

“Back then, my lifestyle was so wild. I changed partners all the time. Basically, my life was about partying,” he recalled.

His parents didn’t know about this wild side of his.

After leading an “out-of-control” life for some years, Abdul decided to go for HIV test although he didn’t have any symptoms. He was then 27 years old.

“I don’t know why I went for the test. I didn’t have any sickness. There were no symptoms. I guess I wanted peace of mind.”

He kept hoping he had not contracted HIV but the result came back positive two weeks later.

Despite the diagnosis, he did not receive any medication and, for a time, was only required to have a regular check-up to update his health status, until his CD4 count — an indicator of how well the immune system is functioning — dropped to below 300.

A healthy immune system normally has a CD4 count ranging from 500 to 1,600 cells per cubic millimetre of blood (cells/mm3), according to HIV.gov. When a CD4 count is lower than 200 cell/mm3, a person will receive a diagnosis of AIDS. AIDS occurs in stage 3 of HIV.

CD4 cells, also known as CD4+ T cells, are white blood cells that fight infection.

Abdul said his CD4 count once dropped from 300 to 109 due to HIV-related stress. He plunged into a state of depression for six months, leading to a loss of appetite and body weight.

“I was depressed all the time. I lost weight because I didn’t eat properly. I only had food to avoid gastritis but I didn’t feel hungry — maybe because of depression.

“But suicide never crossed my mind although I did hope I would die faster,” he recalled.

Support group

Six months later, he found a support group in Kota Kinabalu which helped him through his depression.

Many HIV patients often suffer from depression.

“The group was quite big and the members were strong. They made me realise what I did in the past six months was very wrong,” he said.

With the group’s support, Abdul got his life back on track and once he felt mentally strong, he decided to return to Sarawak.

He has now been back for three years.

Adjusting to the ‘new’ life at home hadn’t been easy though but he knew he had to make up for lost time by moving on rather than dwelling on the past.

“I can say I don’t regret what had happened to me but I’m not proud of my past behaviour either.

“I believe my experience has already been written about but the important thing is how I’m handling it and I think I’m managing quite well.”

Abdul has changed a lot. He has become more mature and learnt to trust God more. Today, he is dedicating his life to helping others. He still keeps in touch with the KK support group.

He is trying to connect with HIV patients in Sarawak to share his experience and help them.

He said those who didn’t know any better kept trying to find a cure and refused medication.

“There are also those who can’t get out of their depression. Despite living with HIV for 10 years, they are still depressed.

“From my experience, people can help and support you but if you do not help yourself, nothing will change. People can only give you 5 per cent — the other 95 per cent depends on you.”

Abdul urged those leading a “wild lifestyle” to get tested if they were worried about their health.

Heavy burden

Abdul admits he is carrying a heavy burden for keeping the truth from his family. He believes it’s something he has to bear for as long as he can.

Although he is already back for a while now, he hasn’t told his family about his diagnosis yet.

“How do you break such news to your family? I still can’t do it. I’m staying with my parents and they don’t know I’m on medication. And it hurts that my family doesn’t know what is going on with me.”

He said he would take every precaution to ensure the safety of his family, adding that he understands he couldn’t keep his secret forever and would do good to his family during “this bonding period”.

“I’m afraid my family will find out one day. If that happens and they can’t accept me, then it’s my fate. But, for now, I better do good. God has given me this chance to do good to them.”

The only person who knows about his condition is his aunt. He is grateful that instead of judging him, she has assured him of her support if he needs it.

“One day, I just decided to text her to break the news. Of course, she was surprised — I expected that.

“She asked if I was okay and assured she was ready to help me. She didn’t ask how I got infected — she knew it wouldn’t change anything.”

Abdul said he led an out of control life for some years. — Stock photos for illustration purposes only

Abdul has also let on to some of his friends. Some continue their friendship while some keep him at arm’s length.

He doesn’t blame those friends who are keeping their distance, saying it’s impossible for them to understand since they are not in his shoes.

Stigma still prevalent

It’s the 21st century but the HIV stigma is still prevalent and misinformation is not helping either.

Abdul believes the best thing for HIV positives to do is to change their mindset on they perceived the world.

“It’s important to stop judging yourself so that you can live a good life.”

Today, Abdul is on medication and required to see his physician Dr Wong Toh Mee at Sibu Hospital every six months.

His focus now, apart from helping others, is to live a meaningful and fruitful life.

“HIV is not written on the forehead and it’s not a death sentence. So, there is no point being depressed all the time.

“If you keep feeling depressed, you cannot contribute to a better world. Don’t be superhuman but human. You can still feel sad or lost but the most important thing is to rise up,” he pointed out.