Stigma and Hepatitis C

It is the disease of junkies. It is the gutter-punk disease, the “for-sure” of the too-thin heroin addict in the street. It was passed in the tattoo studio, in the prison cell, in the shooting gallery, or in the darkened hotel room. We speak quietly to our dentist, this new one, informing him responsibly, watching the shadow judgment pass over his face. Hep C is the secret we contain as we move through our days, because its release will brand us with a past that makes people wonder. We wear its stigma under our shirts.

There are, of course, many ways to get this disease. Some of us got it during blood transfusions before blood banks could test for it. Some of us got it from long ago love affairs or from the shared razors of roommates. Some will never know how it entered their bodies. Many of us were infected before the disease was discovered or named.

Yet...

It has a residual sheen on it, a sunken, derelict, drug-addled identity. And now, even as we struggle with the realities of living with this disease, we must also contend with its reputation, and thus, our own.

When I was diagnosed, at thirty-five, I had already carried Hep C for nineteen years. I acquired it at sixteen, sharing needles with teenaged friends in Boulder, Colorado. I was not a junkie. I was a teenager – rebellious, reckless, and invincible, as teenagers are. We shot cocaine, not heroin - I would have been scared of heroin – and had this “fashion” not swept my high school, back in 1982 when such things seemed reasonable, I would likely never have sought out such an experience.

In my adulthood, I put all the confusion of my adolescence behind me. It was a distant memory, a faded photograph, a movie I couldn’t quite remember. Then, with my Hepatitis diagnosis, suddenly my past was omnipresent, ascendant and inescapable. In having to tell people about my diagnosis, I was confronted with the horror of also having to tell them the story of my past, a story I had long ago buried and abandoned. My whole sense of identity shifted, and where I was one day, a competent and loving mother, a hard worker, a successful writer, and an on-time-to-appointments, don’t-forget-to-vote kind of citizen, I was, in the next, an ex-addict. I felt it as shame, and it distorted my relationship with my illness and how I approached people with it.

If I had cancer, I would have told people. Well, maybe not if it was lung cancer, because I would be afraid they would secretly think “oh, that’s sad, but she did it to herself, smoking all those years.” This is the crux of my embarrassment with Hep C, my fear that people’s sympathy or support is tempered with blame. It is a disease that is perceived as being the result of lifestyle choices – like HIV, like lung cancer in a smoker.

I didn’t choose this, of course. Hep C had not even been discovered back in those careless high school days; AIDS had yet to make its public appearance back in the baby eighties. We knew what we were doing was bad, yes, so leather-cool bad, and that it was risky – we had all seen that scene in One Flew Over the Cuckoo’s Nest where Billy kills himself by shooting the air bubble, so we obsessively tapped our needles to free every drop of air. But then, after the evening, when you hadn’t died, you knew you were okay, and there was no worry that twenty years later you would discover you had been infected by a disease. We were innocents, our pseudo-tough marred by giggles, playing at grown-up.

I had to accept my own story. We all do. None of us are responsible for the accident of our births – this historical moment or that one, this loving family or that terror-father, this home with a rec room or that cold basement apartment. We were children, shaped by our worlds. We are adults, shaped by our childhoods. Every single belief or perception we hold came from somewhere – a book we read, a joke we were told, a person we loved, a prayer not answered. We cannot be so self-congratulatory that we believe we have formulated, all alone, our beings. We are sculpted by a thousand forces, and in crediting them, we can also take from ourselves the weighty bulk of blame we are so used to being crushed by.

Does this mean then that we are absolved from responsibility for what we have become? Of course not. We, alone, have made many choices – some have taken us where we wanted to go, some have left us trapped in places we never thought we’d enter. But the material that goes into that choice making is largely pre-scripted, and much of it came to us of its own accord, from those who surrounded us. In choice-making, we have at our disposal only the information we have been given.

What does this have to do with the stigma of Hepatitis C? I’ve found that I will never be able to look anyone in the eye without shame until I have forgiven myself for all my mistakes and inadequacies. The judgment I feel from others is just a reflection of what I am feeling internally about myself. When I am right with myself, I can face even the sternest disapproval with dignity and, in some cases, even humor.

It became clear to me that I had to forgive myself for shame I didn’t even realize I was carrying. Somewhere, deep inside, I was angry at myself for being the person I had been and not having been more studious, more centered. I had begun to consider my experimentation with drugs a weakness or a deficiency in character. Now, looking back, I realize that I wouldn’t want it any other way. I am that girl. Her bravery then, and yes, as anyone knows who has been hard-core in any way, she was brave, was the foundation for the incredible bravery I carry now. Her endless curiosity, her joy in discovering new possibilities and people and environments - that is a good thing. I admire that in her, in me.

And so our task becomes a total acceptance of all our past selves. If it took Hep C to get us to a place in which we are forced to do this inner work, well, destiny is funny that way.

We live in a culture that allows us to remake ourselves over and over. Few of us live in a village so small that everyone has known us since birth, a womb environment in which we are safe and defined. We live in a moment on this planet in which we are astoundingly mobile, transitioning from city to city, from partner to partner, job to job, hobby to hobby, even family to family. As we build each new identity, we tend to simply let parts of our past drop away, especially the parts we are uncomfortable with.

We are all those people; we are every period of our life added together. The love affair we try not to remember because it hurt so badly, the office building we avoid because it reminds us of that time we were fired from that job, or the sweater we fish from the bottom of the closet to stuff into the Goodwill bag because we wore it on the date with that creepy guy – these are all memories that we somehow need to include in our story. Have you ever seen a movie composed purely of triumphs and sunsets? All the most moving and meaningful human drama is complicated and dichotomous. We wear the scars of our past, and they ornament us and make us more than just simple compilations of cells. We are absolutely distinguished from each other by the thousand tiny details of our lives and how they live in us.

I am a competent and loving mother, and I used hard drugs as a teenager. I am an organic produce eating vegetarian, and I have Hepatitis C. I am an excellent worker, and I need more sick time than most people. I am intelligent and thoughtful, and I have made some bad decisions in my life. I am brave, and I am frightened.

I am human.

You will see that shadow pass across the dentist’s face again. Someday, someone might decide not to date you because you have Hep C. You might be in a job in which you work with children, and if your employer finds out about your disease, they might be nervous that in a natural disaster or an accident of massive proportion, you might mix blood with one of your charges.

I have sat through work sponsored safety meetings, the ones where they go over the protocol for dealing with blood spills, and felt my face go warm as they talked about “the risk of infection.” I evade the blood drive, carry plastic gloves in my pack when I go backpacking, and tell some people I have a “chronic liver condition that I acquired in childhood”.

This is the reality of our situation. We will sometimes feel shame, and we will sometimes keep quiet. Other times, when we are feeling strong and comfortable, we will educate, will speak freely, and will share our experience and open doors that were once closed. Both these things can happen in a single day, and both of them are okay.

This is just life, and we are alive.

Comments

[Mona Davis]

so far, I'm impressed