Time to Come Clean

I’m a writer in all that I do, but for the past year I’ve hidden from exposing myself too much. Now that it’s all over, I find it’s time to speak out and lend my voice to something that’s affecting baby boomers in larger numbers every year.

It’s the silent disease, and after AIDS, it’s the most shameful disease of all because of its association with drug addicts, even today.  I discovered the stigma as I began my journey for treatment of Hepatitis C in 2013. There may be some headway, if this commercial from HepcHope.com that’s playing frequently on the airwaves is any indication.

My journey began in 1975, and I was twenty-one years old. I was in my second year of college paid for with scholarships and student loans. I worked full time and took a full load of classes. I didn’t have health insurance, and I didn’t have the financial support of parents. I developed a pimple at the base of my spine that grew and grew, filling with liquid until it was hot to the touch with a size somewhere between a golf and tennis ball. Finally, when I couldn’t sit any longer, my roommate took me to the emergency room where I was immediately admitted and prepped for surgery for the removal of an abscessed and infected pilonidal cyst.

My brother and mother came to the hospital as I went under the knife to puncture and drain the cyst. I lost lots of blood and my brother and mother were asked to give blood, but they weren’t my blood type. I was given a blood transfusion with blood from the local bank. At that time, anyone could go to a blood bank and give blood in return for $10. Anyone meaning mostly drug addicts in need of a quick few bucks. It wasn’t until the 1990s that blood was screened to prevent injecting someone with HIV or hepatitis or some other blood-borne disease.

I recovered from my surgery and the cyst never made another appearance. I lived my life unaware that on that day in a hospital in Lansing, Michigan, a doctor introduced an unnamed virus into my blood.

In 2008, after a routine full-blood work up, I was diagnosed with Hepatitis C, which is transmitted through the blood, most often through needle sharing and blood transfusions. Health care practitioners, prior to the development of safety standards, are also susceptible. But unfortunately, the stigma of drug addict still follows the victims of this disease that affects the liver and untreated can lead to liver cancer or cirrhosis. Hep C can also lie dormant and undetected for decades as it did in my case.

My doctor determined after a liver biopsy that I was in a safe category to wait five years or so until the treatment for Hep C improved. So I lived my life and forgot most of the time I had the virus. I imagined myself in the very tiny percentage of folks who have it disappear for no discernible reason. My doctors never told me this–I surmised it from my reading and my ability to live in denial.

By 2013, I could no longer live in denial. The Hep C virus, while silent, caused another complication called cryoglobulins, a bad protein produced by the liver that essentially causes the blood to pool and can attack the body anywhere at anytime. Mine attacked the nerves in my legs and in my left arm. It took several months to be diagnosed and for the Hep C to be called the culprit. In that time, the cryo destroyed two major nerves in both legs and one in my left arm. My feet are numb most of the time and are ice cold to the touch. I have no feeling in my little left finger and a permanent weakness exists in my left hand. Before it could go any further in my body and destroy an organ, I began the grueling treatment for Hepatitis C.

The treatment had improved in its effectiveness, but it was still a horrendous seven-month process. My doctors gave me a 75 percent chance for killing the Hep C virus, and a 60 percent chance of abating the cryoglobulins. Before I began treatments, a psychiatrist had to declare me strong enough mentally to begin treatments. Major side effects of the three-cocktail drugs all include depression. That over and declared ready to begin, I then had to take a class for administering the pills and shots and understanding all the side effects. The class was taught by a representative from the pharmaceutical company.

“Be careful who you tell about your illness,” he said to begin the four-hour class. “People will judge you if you tell them.”

The week before, during an EMG to test the damage of my nerves, the neurologist running the test said, “So you’ve got Hep C. My uncle died of that. He was a drug addict.”

I ignored him, but he continued as he poked needles in my arm trying to determine the level of nerve damage.

“I worked on the East side of Manhattan, and the only Hep C patients we had were heroin addicts and homosexuals.”

I clinched my teeth and prayed to God for my own set of needles to use on this insensitive doctor, I was trusting to poke and prod my arm.

I found my doctor and her nurse practitioner to be a little brisk with me in our initial meetings. In fact, my husband didn’t like the doctor at all. After one of the first appointments, the nurse looked at me and asked me to promise one thing.

“What?” I asked.

“Promise me you won’t take any new drugs.”

“Of course not; you folks are the ones prescribing my drugs.”

Later my husband and I decided that every one of the professionals we’d seen so far assumed I was a drug addict. I will say as soon as my doctors and nurses realized I never missed an appointment, and I kept to the strict regimen, and I asked intelligent questions about my illness and treatment, their behavior toward me changed. When I told the doctor about the blood transfusion in 1978, which I’d forgotten about until my brother reminded me, she almost leaped for joy at the news and wrote quickly in her notes.

The day the doctor announced that the virus was no longer detectable, we both had tears in our eyes, and I received hugs all around. In two weeks, I go for my final blood work, and if comes back at zero detection, I will be set free. The cryo seems to be at rest for now as well, but I’m still being treated for that.

I feel better having written this post. Why did I write it? I wrote it to make an attempt to do away with the stigma attached to this disease so others don’t have to feel the shame I’ve felt this past year. For months, I’ve kept hidden from everyone, except my closest family and friends, what I had, and why I was receiving “chemo-like” treatments. When asked what I had, I told them it was a rare virus. I even found out a very good friend made up a story for her family about my illness. It all hurt me at a time when I needed support and kindness.

I’ve heard that new drugs are being developed that will be even more effective and less invasive on a person’s body. Toward the end of my treatment, my hair began falling out in handfuls. Today, my hair is the shortest it’s been since I was a toddler, but it’s new hair, and it represents my good health and new appreciation of life.

thorny starfish