by Katherine Clarke

So often, when I tell people I have chronic Hepatitis B, they become very serious. Of course they do — it’s a serious disease. But I know without asking them that they are really thinking of Hepatitis C. (The confusion is understandable. The names differ by one letter, but the illnesses are very different.) And when they ask, “but don’t they have a cure for that, now?” I sigh, because there are 800,000-1.4 million people in the United States who suffer from chronic HBV, and many are unaware due to lack of symptoms.

It’s a very common disease that no one seems to know much about. Much like Hepatitis C, it can be contracted via using needle drugs and/or bodily fluids such as blood and semen and via sexual contact. Unlike Hep C, it can be more difficult to treat, and a cure has not been found.

I was born in March of 1979 in Boston. My due date was in June. For the first two weeks of my birth, my parents were unsure about my chances of survival, but I stayed alive and was placed in an incubator at Children’s Hospital for three months. I have no memories of that time, and have tried to retrieve information from both of my parents (one of whom was an unreliable narrator to say the very least) as well as obtain my medical records from Children’s. The reason is this: I needed to understand my past in order to make sense of my present. In 2001, I tried to give blood and was denied due to being a ‘carrier’ of the Hepatitis B virus. At the time, I took myself to a specialist at the local hospital in the town I grew up in. I tried to ask him whether or not this meant I ‘had’ the disease, but he talked in circles and my head felt foggier upon leaving his office than it had upon entering it. My father and stepmother believed I had been exposed to the disease from sex, as I had never done needle drugs. In 2001, the four people I had slept with in my life were all long-term boyfriends. I knew in my heart that the diagnosis had something to do with my birth, because I’d never been promiscuous. The more I pondered that statistic about most chronic cases being contracted in infancy or childhood, the more certain I became that this was true for me, too.

For the next 6 years, I pretended the ‘carrier’ diagnosis wasn’t there — had never been there. I drank with impunity, I had sex (always protected) and I generally lived my life as a person in her 20’s tends to do, except that I wasn’t carefree, not by any means. The diagnosis gnawed at me, created many sleepless nights and a lot of self-pity. I had gotten no help or support from my family in regards to it, and I felt alone and unable to face what it meant. By the time I moved to another city in 2007, I realized that I had to follow up with a liver doctor.  My diagnosis as a carrier was something I kept in the very back of my mind, and I knew it was something I’d not only have to follow up with and face, but was something I longed to understand, even if the results were terrifying. The unknown had become more frightening than the known.

I did see a liver specialist, and by that time, the disease had turned chronic. Now, I know of exactly two statistics out there that bolster me. The first, from the NIH website, is this:

Hepatitis B was the most common cause of acute liver disease in the United States with an estimated 200,000 to 300,000 persons infected annually with the hepatitis B virus, including approximately 20,000 children. The United States was in the midst of an epidemic of hepatitis B that lasted into the 1980s.

The second was this, from the European Centre for Disease Prevention and Control:

The development of chronic HBV infection is inversely associated with the age at which the individual is infected. Up to 90% of infants who are infected with the virus develop chronic infections but less than 5% of infected adults develop chronic infection. Individuals with chronic HBV infection are at a higher risk of complications including liver cirrhosis (25%) and cancer (5%). In addition, they may be at risk of transmitting the infection to others.

These statistics indicate that it is not only possible, but highly probable, that I contracted Hepatitis B at birth. The question of whether or not I underwent a blood transfusion has never been answered, but I do know that my mother received one. I also know that I was being poked and prodded with needles day in and day out, and that one of those needles very well could have been dirty. There is no blame for this, but considering the stigma surrounding the disease — you have it because you’re a slut or a junkie — being seen under an assumption that I contracted the disease from sex (and irresponsible sex, at that) and not from something that was irrevocably out of my control has been a bitter pill to swallow.

I came to the realization a few years ago that what was important was how well I took care of myself, and not who thought what about how I got the disease in the first place, although I would be glad to solve that mystery, if only for my own sake. I have been incredibly fortunate to be living in a city with some of the best liver doctors in the country, and I’ve been lucky, too, that my antiviral medication has been working so far. I no longer drink, and my disease has registered as undetectable for at least five years running. I have what the nurses in the office told me I would when I found out my HBV was chronic and couldn’t stop crying: a normal, happy and (hopefully) long life.