Here what it's like to live with hepatitis B

  • Life with a chronic illness like hepatitis B is not easy in Nepal, where ignorance and misinformation is rife
- SIJAN SHARMA, Kathmandu

Mar 6, 2019-

When I was 18, I tested positive for the hepatitis B virus. My diagnosis came when my late brother had a motorcycle accident and the resulting operation revealed to us that he had the virus. The hospital conducted an inquiry, tested members of my family—my sister and my mother—and discovered that they all had the hepatitis B virus. I was away for a little while and when I returned, they broke the news and asked me to go in for a test. It was then that I tested positive for hepatitis B (HBV). What this meant was that I’d have a difficult life, though most of the complications would be psychological.

By the time I was tested, my sister, brother and mother had given me enough information to not worry too much about the infection in my liver. But I was very aware of the kind of ignorance and stigma attached to this kind of disease in this country. I felt bad for myself, really unlucky. I was going to have to live a life where I could never disclose, even to my best companions, that I am HBV positive.

I was 22 when my brother died—he overdosed on purpose. Until then, I wasn’t having any real problems due to HBV. But then, in the year that followed, I became a heavy drinker. I’d listen to the music of drunken poets like Jim Morrison of The Doors and loved John Bonham of Led Zeppelin, who also had alcoholic tendencies. I’d write songs and poems, try to play them on the guitar, and even went on a wild trip to Goa, where I went all alone, drinking from dawn to dark, writing plenty of lyrics. It was then that the infection began to show. I started suffering from jaundice quite frequently. This troubled me a lot and made life even more difficult. So, I decided that I shouldn’t drink anymore.

Over the years, I had been worried about my disease. I did a lot of research on HBV and observed it in the real world too. HBV is a very serious illness if neglected. Both my uncles on my mother’s side died due to alcoholism. So have many others. A neighbour of mine recently died and it was later disclosed that he had contracted HBV by the time of his death. Perhaps they all had the disease and a lack of awareness along with their own ignorance caused their liver to get so damaged that they ultimately died. For this reason, I am really glad that I quit drinking five years ago.

Although not as infamous as HIV or cancer, HBV is a major health endemic and a challenge for health workers all over the world. It is estimated that around one in five people contracts the disease at least once in their lifetime. This disease is more common in countries like ours, and it can be estimated that there are at least hundreds of thousands who are infected.

There are two types of infection with the HBV virus. In most cases, people who test positive can expect to clear the disease in six months from when they were infected. This usually includes people who caught the virus later in their lives—in youth or adulthood. It is an illness that comes and goes, as the body is able to produce anti-bodies to fight the virus. However, cases like mine are chronic infections. This means that the virus will probably never clear. I was too little when I got infected and so, despite administering vaccinations when I was four or five years into my childhood, my body was unable to fight the disease off.

My sister, who now lives in the UK, often tried to warn me, telling me to seek medical help. But I was ignorant and I didn’t accept the reality of my illness. However, over the years, my search for information and a desire to live a life untroubled has made me sufficiently aware of the condition that I am in. HBV, on average, reduces life expectancy in women by two-three years and in men by four-five years possibly because of drinking. I haven’t suffered from jaundice a single time since I stopped drinking. But unfortunately, not everyone is as lucky as I am and people continue to live in the dark, in the absence of information and the presence of the stigma attached to hepatitis B.

I am glad that my sister now lives in a society where the disease is understood. She has a husband and a daughter, both of who don’t have the disease, since it can easily be prevented if you let your spouse and doctors know about it. In our country, however, the darkness remains. In Nepal’s new Criminal Code, the government has mandated a fine of up to Rs 100,000 and a jail sentence of 10 years for anyone who knowingly passes hepatitis B to others. However, no information about how the infected will be helped has ever been disseminated.

But I don’t care for the government. It is up to me as an individual to act upon the current state-of-affairs and try to help make things better in whatever little way I can, even though some of you now may feel an aversion whenever you see me.

Sharma holds a Bachelor’s degree in Business Management


Published: 07-03-2019 07:00

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