Getting a hepatitis C diagnosis can be very upsetting, particularly because the disease is one that’s not widely talked about—even though an estimated 3.5 million people in the U.S. are currently living with the virus. And while speaking to your doctor is a necessary starting point to managing the disease, sometimes you also just want to hear the real deal from people who have or had hep C to know what to expect when it comes to day-to-day life.
Below, these three patients share the advice that best helped them deal with their hepatitis C:
Karen Hoyt, 62, diagnosed in 2010 (unclear how it was contracted); founder of ihelpc.com
Rick Nash, 33, born with hepatitis C; founder of hcvme.org
Connie Welch, 61, diagnosed in 1994 after an outpatient surgery in 1992 where an infected scrub nurse who was abusing drugs reused syringes on patients (40 people in total were infected from this incident); founder of lifebeyondhepatitisc.com
Prepare for a Daily Rollercoaster of Emotions
No matter what stage you’re in, whether it be figuring out your diagnosis or starting a treatment plan, each step of a hepatitis C journey can bring on an array of emotions. “Before treatment I felt terrified and kept hoping that the diagnosis was all a nightmare,” says Karen Hoyt. “I had very little energy and my body hurt every single day.” Once Hoyt started treatment, she focused on the end goal to keep her spirits up. “Every time I took my medication, it was one step closer to being cured,” Hoyt says. “I imagined that the pills had superpowers, scrubbing my liver clean of the virus. When taking an antacid or using extra skin cream to get me through the side effects of an upset stomach or irritated skin, I didn’t let it get me down. I knew it was worth the effort.”
Hoyt also recommends being rigid when it comes to your self-care, and most importantly, to not feel guilty about it. “I was stubborn about getting rest and eating healthy foods during treatment because it was all going to pay off in the long run,” says Hoyt. “After treatment, I immediately felt much younger. I hadn’t realized how tired my body had slowly become. It was exciting to think that I could regain all that I lost from having the virus and still live a long life.”
Don’t be surprised to feel a little blue, too, particularly if you have to deal with the remnants of hepatitis C. “I felt clean, like my blood wasn't circulating a virus but I was also disappointed because I still had liver disease,” says Hoyt. “But I stayed determined to continue my liver-friendly lifestyle because I was just so happy to wake up every day.”
Make an Action Plan
Once you’ve had time to process the information behind your diagnosis, Hoyt says to move forward by setting up your treatment plan with your health care team. “I formed a very strong relationship with my medical provider’s office staff,” says Hoyt. “They helped me find a way to pay for treatment and encouraged me to be compliant by making a schedule of when my medications would be taken. They directed me to speak with a nutritionist to learn about liver-healthy foods, put dates on the calendar for future blood tests, and discussed back-up plans on what we would do if I had side effects from my treatment.”
Just remember that your team will consist of multiple players, and all have an important role in helping you manage hepatitis C. “My liver specialists helped me become educated on hepatitis C and treatment,” says Connie Welch. Hoyt agrees, adding that in the beginning finding an online forum with people who also had hepatitis C helped her figure out what exactly to ask her doctor and how to support her liver with the right foods and vitamins until they could cure the disease.
Focus on Your Health Head-to-Toe
Hep C can make it hard for your liver to handle its primary duties, such as filtering the blood, due to inflammation, scarring, and possible fibrosis. But a few simple lifestyle changes can give your meds a boost and not only help you feel better, but also prevent certain complications. To ensure his overall health, Rick Nash followed a high-protein, low-sodium diet and exercised regularly.
“The diet was to help offset the muscle wasting that can happen with advanced liver disease and reduce symptoms of brain fog and ascites (fluid retention that can lead to abdominal swelling),” says Nash. Research has found that muscle wasting is a common issue in patients with chronic liver disease thanks to reduced nutrient intake due to nausea, drug-related side effects like diarrhea, as well as reduced intestinal absorption by the pancreas stemming from liver complications. Working with a registered dietician can help you create a meal plan that works for you.
While a healthy diet and exercise routine play a big part in keeping your immune system strong, don’t forgot to focus on your emotional, mental, and spiritual health, says Welch. “I relied on my faith in God and prayer a great deal,” she says. Whether it’s therapy, meditation, yoga, or something else, Welch says to make sure to address all areas of your health equally to help treat and deal with hepatitis C.
Stick to the Routine
The predictability of a routine, whatever that is for you, can help you feel more in control and energized to manage living with hep C. “Routine was my savior at many moments in my journey and helped me stay alive when the math didn't look good,” says Nash. “Routine ensures compliance with an appropriate diet, helps monitor symptoms or irregularities, and helps your memory by reinforcing similar elements on a daily basis.”
Lean on Your Loved Ones
You’ve probably helped members of your family before, right? Now is definitely the time to let your family help you. “Surround yourself with a strong support system with caring people who understand what you're going through,” says Welch. “One friend would call when she was going to the store and ask if she could pick something up for me while she was there. I really appreciated that because it made me feel like I wasn't putting anyone out since she was already going. Others called me regularly to see how I was feeling, and my brother and sister-in-law showed up from out of town to go to the doctor with me and help with things around the house.”
Hoyt agrees, adding that the road to treatment involves both support and self-determination. “In my case my liver was failing, and I was moved to a transplant center,” Hoyt says. “To cope, I set some goals for myself. For example, I had to keep my job in order to have insurance. My family helped me stock up on healthy protein shakes so I could carry my lunch, and my daughter made room for me on her couch just in case I got too weak.”
If you’re comfortable with it, expand your circle past family, suggests Nash. “I did my best to keep my friends close, too, because the most important thing which can help is a person’s support network,” he says. “Because my network consisted of about 20 some odd people it meant it also reduced caregiver fatigue, so that no one would feel overburdened. They helped me when I couldn't do or remember things, as well as financially and emotionally.”
Attitude Is Everything
Attitude and outlook have a huge impact on how we deal with something and affects our health and wellbeing. “I knew and said often that hep C lived with me, I didn't live with it,” says Welch. “Don't allow hepatitis C to overshadow your life and rob you of joy and the good that is in each day.”
On top of being positive, make sure you give yourself enough credit for what you’re capable of. “Looking back I wish I had known that I had everything it would take to cure and get past hep C,” says Hoyt. “During moments of tough side effects and symptoms, I doubted whether it was possible to live through the treatment. Even though my body was super sick, I found out how brave I was.”