Hepatitis Patients

5 Reasons to Let Go of Hepatitis C Stigma

The following is a guest post from Jacque, a former hepatitis C patient

 

My name is Jacque. I was diagnosed with the hepatitis C virus (HCV) in 2004 and I was cured in 2015.

Hepatitis C is still a misunderstood and stigmatized disease. This is my story of discovery and living with hepatitis C until there was real hope for an effective treatment. Along the way, I learned to let go of the stigmas attached to hepatitis C—both internal and external—in order to move forward successfully. I am happy to share my story now, especially since the CDC has declared May “Hepatitis Awareness Month” and May 19 is “Hepatitis Testing Day.”

 

1. Understand that not everyone is informed.

My life was going along pretty well and all my medical tests showed I was healthy. Then one day in 2004, my sister, Susy, called to tell me she had just found out she had hepatitis C. She told me that I should get tested immediately because chances were that I had it, too. We were close sisters and had lived the same lifestyle in the past.

After the incredible shock of her news wore off, I asked her why she got tested. We’d both had fluctuating liver enzymes for many years, but no doctor ever showed concern. Finally, one of her doctors set up a series of liver function blood tests to get to the bottom of it.

So I did the same. That’s how I found out that I had hepatitis C. At the time, I didn’t know much about the disease, just that it was serious and came with a stigma, much like HIV/AIDS.

I learned that hepatitis C is a blood-borne viral disease of the liver and that it is infectious. Suddenly I had an explanation for the time I mysteriously came down with jaundice. That happened back in the ‘70s, when I realized my skin was beginning to discolor. Soon, I looked like a yellow monster and it took me over six months to recover.

Most of my family shunned me. They were so startled by my appearance and my obviously sick state that they avoided me. The hepatitis C virus hadn’t been discovered yet, so no one knew what was happening to me and nothing could be done. It was a scary situation.

As usual, my sister and I carried on as a team.

Susy was concerned about me. She checked on me when she came home from school. She brought me food and drink and later, as I improved, she helped me get outside so I could sit down in a chair to enjoy the view from the yard. She took time to talk with me. She was a lifesaver.

 

Hugging

Later, those who’d rejected me apologized for not helping me during that time. It took me awhile, but I did forgive them—once I understood that they were simply acting out of fear. They didn’t want to become sick, too, especially from an unknown condition.

I wasn’t sure how or when I got hepatitis C. There are many ways people can acquire the disease, such as through transfusions or while working in the medical field. However, it seemed most of society believed that you must be an IV drug user and sexually promiscuous to become infected—essentially saying, you reap what you sow. I felt like I was given the label of a pretty bad person who didn’t deserve any empathy.

I decided to undergo the only treatment available at the time. Unfortunately, within one month I had such bad side effects I couldn’t continue. I got so sick at work one day that I just disappeared. People had thought so highly of me there. I couldn’t just ruin my reputation by telling them I had hepatitis C and that I would have to be out sick while I went for treatment. So I left and never went back.

I didn’t get another job for almost two years. The only thing I could do was wait for another treatment that might work. My sister joined some support groups. She said she didn’t trust the current treatment. Many people she knew had hepatitis C and were dying.

The thing about hepatitis C is that in the beginning it is a silent killer. It shows no symptoms and it usually just keeps getting worse, going from an acute stage to chronic. That may take decades. At the end stage, all that’s left are cirrhosis and extremely expensive liver transplants.

Hepatitis C is a very serious disease. Even though you might be freaking out inside, as a carrier, you have to be socially responsible to others—to protect their health and wellbeing. If others might be exposed to your blood, the ethical thing to do is tell them to be careful since you have an active case of hepatitis C.

 

Jacque_Susy

2. Remember hepatitis C is a medical condition, not a label that defines you.

After my failure with treatment, I didn’t feel too good about myself. I just wanted to keep my secret. I wanted to ignore it.

The only thing I could do was try to live a healthy lifestyle and change any life-threatening behaviors. One of the only ways I could deal with this was to gain knowledge, research online and check in with my doctors regarding new treatments.

I was having difficulty accepting myself with this diagnosis. I felt ashamed, guilty, fearful, angry and unworthy of love.

Negativity started to take over my life. I felt my best bet was not to share this news with anyone, except for my family. I kept it hidden and ignored it, pushing it way back in my mind. I couldn’t stand judgment from others, even if it came from their lack of understanding. I just couldn’t live as a social outcast. My vanity—my reputation as a “good, smart girl”—would be destroyed.

The funny thing is that I judged myself so harshly for the mistakes I’d made and gave myself a much harder time than anybody else ever could.

I needed to do something.

The motivational speaker Wayne Dyer said, “If you change the way you look at things, the things you look at change.”

What I needed was an attitude adjustment, to let go of all these stigmas—real or imagined. I needed to be positive and live in the present. Of course, it is easier said than done. It is hard to let go of perceived stigma, to face those bullies and stand up for yourself. It took more energy to keep locked into these feelings than to just let them go.

You have a choice in how you see yourself.

 

Jacque

Once I freed myself (through a lot of inner work), I felt relieved, as if a huge burden was lifted, even though I still had the disease. I felt I could be more open and honest when it was appropriate and not worry so much about what others might think. Now, I realize that it doesn’t matter, anyway; how I think of myself is the only thing that matters.

There is no reason to punish yourself forever or to take that punishment from others. All I know is that once I released the chains that were binding me, I was less angry, less anxious and less self-destructive. Confidence and courage took their places. Through acknowledgment and acceptance, I got myself back. I could live my life again.

This long process empowered me. I felt I had some power and control over my destiny. Now, I felt I could achieve my goals.

 

3. Getting tested is the first step toward getting better.

One of the most important things I did for myself was get tested. Even though I really didn’t want to know, I knew that I had to know. There was no reason to hide my head in the sand.

Uncertainty about the results generated a lot of stress. I wasn’t totally alone. Thankfully, I had my sister who lives close to me, as my cheerleader.

Many people don’t have any idea they have contracted hepatitis C until it is too late. It is a life-threatening condition. I think everyone should ask their doctor to do a hepatitis liver panel along with the normal CBC blood work that is most often done.

The month of May would be a good time to get tested since it is Hepatitis C Awareness Month. There is a lot of press encouraging testing.

It seems strange, but no doctor ever performed this test until I was proactive. I had to ask for it. Other tests may follow, such as a viral load test, liver/abdomen ultrasound and liver biopsy. I was not afraid of these. Since I turned up positive, these further results were necessary to establish the condition of the liver and see if any damage had been done.

Throughout the years, I periodically had my viral load taken to see how I was doing, if levels were the same or if progression was occurring. I even made a chart with all this information each year to track the numbers. But that’s just me!

 

Sitting

4. New treatments offer new hope.

Things have changed. Now, there’s a real chance for a cure. Because of wonderful scientific achievements, we have brand-new treatments and real possibilities for more on the way.

Since 2011, I kept asking my doctors, “Is it here yet?” I had been following scientific and pharmaceutical articles regarding hepatitis C. Finally in 2015, I was evaluated for the newest oral medication treatment. New treatments can be expensive, but luckily my insurance policy paid it all for me. I had to go through all the tests I mentioned to become qualified. Once I was approved, a system was established for shipping and follow-up.

I took one pill a day for three months. With this new treatment, I experienced no downtime. I had no serious side effects. I was just a little tired sometimes. I was able to work and perform my daily routine without interruption.

Viral load testing was done monthly. I had an undetectable viral load after the three-month treatment—even after just three weeks. It has been exactly one year since I began preliminary liver testing—including blood work, an abdominal ultrasound and a liver biopsy—and waited for approval to begin treatment. Don’t let these tests scare you; the liver biopsy wasn’t as bad as it sounds and the process was fairly quick and easy.

I recently took my final viral load test. I reached hepatitis C “Sustained Viral Response (SVR),” which means that I am definitely cured. I can’t even tell you how excited and happy I am.

It probably was the most significant time in my life—conquering HCV.

The liver regenerates. That means as you move forward, your liver can repair some of the damage done by the disease.

A cure isn’t out there yet for some strains of hepatitis C, but don’t despair; research is being done and a new cure could be right around the corner.

Never give up hope. Keep fighting! There is financial aid available; check online and with your doctor. It doesn’t matter how you got it. The mission is to get cured. Even as expensive as the new drugs may be, we have been given a real chance to eradicate hepatitis C.

My sister, Susy, has started this new treatment journey in the hopes of curing her hepatitis C. I believe she will be cured and I, of course, will be there for her every step of the way. We both have the same viral strain (genotype 1a), the strain this new drug is specifically designed to target. She saw me go through treatment and be cured. Now, it’s her turn.

I know someday we are going to be able to look back and say, “Yes, we had hepatitis C before, but now we don’t!”

 

5. You’re in a unique position to help others.

I have come to believe that it is a good thing, for me and for the community, that we share our hepatitis C journeys. I want to provide support to others who may be in need. Whether you are cured or in treatment, acting as an advocate will help others navigate their road to health and wellness. I have found that being willing to share my experiences raises awareness to promote prevention and health care access for everyone with hepatitis C.

Educating the community on this issue can be done in a lot of ways. You can form support groups, give a speech, take part in TV interviews, write blogs, volunteer and more. I am proud to say that I recently participated in a professional video shoot with my sister to share and illuminate our hepatitis C stories. I hope that writing my story will inspire others to do the same.

Hepatitis C is a judgment-free disease, an equal-opportunity infection. Now we have the power to take a stand against it together.

 

 

The information herein may not be construed as medical advice. The medical information on this site is provided as an information resource only, and is not to be used or relied on for any diagnostic or treatment purposes. It should not be used as a substitute for professional diagnosis and treatment. It is best to obtain medical recommendations from your physician.

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