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

thorny starfish

22 thoughts on “Time to Come Clean

  1. This is a courageous and necessary post, Patricia. Your description of how you were perceived by the medical community is so important. It wasn’t until you made it clear to them that you had got to this point in your health road through no fault of your own (an infected blood transfusion) and the nurse could joyfully make a note in your file and then I’m imagining others felt they had permission to stop judging you. What a road to have to walk. Health care practitioners need to stop judging. I’m so glad you could side-step them, still no one deserves to be judged. I feel for what you must have gone through and I applaud your courage in writing this post.

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    • Thank you, Francis. It certainly took me long enough to get to this point, and I’ve always been a very forthcoming author using my life experience to express themes. I never felt comfortable enough until I saw this commercial to share the most serious medical crisis of my life.

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  2. You are a brave and amazing woman, and I’m glad to call you friend. I have another friend fighting the same battle. He contracted it using his brother’s razor. His brother was a drug addict, but he never touched a drug in his life. So hard to deal with the stereotype. Hey – buy a floppy hat with a big daisy on it!🙂

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    • Thanks, Lori. My daughter had to be tested when I was diagnosed because I could have transmitted it to her through the birth canal. But I was most concerned over those razors we’ve shared over the years. She thankfully does not carry the virus.

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  3. Well written, moving and, above all, honest. Thank you so much for sharing your journey. I’m so sorry to hear about the complications, including the judgmental treatment you received at times. I can’t even imagine how trying that would be.

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      • I come from a family riddled with addiction–alcoholism and eating disorders, primarily. While I never suffered from either, myself, one of the cardinal familial rules when I was young was that we never talked about these ugly truths with anyone. I was nearly an adult, having carried the weight of that knowledge and the harm it did to me and others for years, before I broke that rule and talked to people about what had been going on.

        I feel for you, both in regard to the very real physical complications, which frankly suck, and the judgment. Not having lived your ordeal, I have no idea which has been harder, but I suspect neither was easy. What my own experience has taught me, though, is that the things we keep hidden in fear and shame have the potential to pull us down as much as anything else.

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      • So true. I don’t think you family is so different from the majority. Children of alcoholics are taught to keep everything hidden and to hide behind masks and present a pretty picture to the public. That “picture” shatters very easily. I feel so light after having written this–I don’t think I realized how heavily it weighed on me. Of course, when I was in the middle of the treatments, I had no energy to fight it. (But I did manage to publish two books!)

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  4. You don’t have anything to be ashamed of; it’s the people–particularly those in the medical field who should know better–who should be ashamed of jumping to conclusions. Kudos to you for coming forward so others can hold their heads high. And I can’t tell you how glad I am you’re on the other side of your treatments now and feeling better. Thanks for sharing.

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    • Thanks, Staci. You’ve been a great support through this past year. It doesn’t matter what cause an illness either. I really thought we were beyond the early years of AIDS when health care practitioners refused to treat dying patients. Evidently, we still have a long road ahead. I had to do my part.

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  5. Wow Patricia! Good for you for telling your story, and what a story it is! The husband of a friend of mine died from liver cancer, which I imagine was from Hep C, and I know of several people with the disease. You are so right, one should never judge and I admire you for “coming clean”. Most importantly, I am so glad you are well!! Eating as you do helps too, don’t you think? Best of luck with the final blood work!!!

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    • I think my diet was a major contributor for my health during the treatments. Even though I was fatigued and dizzy much of the time, I never caught a cold or the flu and I was greatly compromised with the treatments. My white blood cell was so low, I had to take another shot to boost that, but I never got sick beyond what the meds were doing. Thanks for the encouragement, Betsy.

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      • I have been having internet issues so I guess you didn’t get the whole post. What I said is I love your organic gardening posts. I recently found out a close family member has advanced cancer and all the research says good nutrition is a must! So yes if your body gets enough nutrition it will be able to heal and handle some of the cures we have to endure. I am so glad you are well again, and Florida misses you too! It has been a brutal winter.

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      • Kathy, so glad you posted the whole thing. I thought something was cut off. I’m sorry to hear about your relative, but with loving support and healthy nutrition perhaps the journey will be easier. I’m so happy Bob is feeling better because the day he gives up gardening will indeed be a sad day. My best to you and one day we shall meet up again in Florida!

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  6. Pat, I am so glad you have shared your story with a larger circle. Your generosity of spirit is evident. I’ve learned so much more as a result of the post. Marisella

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  7. Thanks for your post. I am later stages of my third treatment for Hep C. A thing that I have learned through it all is that people can be darn stupid and prejudicial. Therefore, I try and keep my Hepatitis and non-Hepatitis communications separate.
    Your story emphasises once again that Hepatitis C is systemic disease. It certainly affects far more than just the liver. I was quite interested in your taking a four-hour treatment class. I had not realized that any patients get more than 5 minutes with a nurse plus a handful of pamphlets.
    Best of luck and best wishes on your six month SVR.

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    • Hello, thanks for your comments. The classe was a requirement by my doctor here in Pittsburgh. They wouldn’t approve the meds without it. I did find some things helpful as did my husband, but the man who taught it made some ignorant statements. I hope this third treatment is successful for you, and if not, perhaps the new treatments being approved will do the trick.

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