Hepatitis C virus (HCV) is infamous for its stealth, often remaining undetected in the body for decades. But one symptom above all others tends to rise to the surface to rear its ugly head. Ask a different expert and you’ll get a different estimate on its prevalence, but most will agree that fatigue is highly common in the hepatitis C population and often poses a major challenge to their overall quality of life.

Fatigue is a notoriously tricky beast—highly subjective and hard to define. Beneath its wide umbrella are symptoms such as sleepiness, a lack of physical energy or stamina, an inability to concentrate, trouble with memory, and the ever-nebulous “brain fog.”

For people with hepatitis C in particular, it may be impossible to ever fully understand where such physical and mental symptoms come from, because there are so many overlapping potential causes. To wit: research on this topic is often contradictory and inconclusive, or just plain non-existent.

The virus itself may cause fatigue, perhaps by increasing the presence of the body’s cytokines, a key part of the immune response, which can then lead to fatigue in the same way a flu would. Those with cirrhosis of the liver from any cause are also known to struggle with fatigue.

Non-viral contributing factors tend to be better understood and may in fact be a bigger part of the problem. Because drug and alcohol use is so prevalent among the hep C population, both are possible culprits, as are psychological illnesses such as depression and anxiety. It should come as no huge surprise to anyone who has grappled with a hepatitis diagnosis that simply knowing one has the disease may cause depression, which can lead to fatigue. And of course, until therapies for the virus improve in the coming years, treatment means taking interferon, which causes fatigue in just about everyone.

It may require various levels of sleuthing before you can begin to identify why you’re not feeling well. Such an understanding will hopefully lead to ways to mitigate your symptoms. But even if such success ultimately proves out of reach, at the very least you can learn coping strategies to better manage life with fatigue.

Start a Dialogue With Your Doctor

An important first step is to have a comprehensive medical exam, during which you communicate your symptoms with your clinician. Start this process with a hepatologist or your primary care physician. The doctor can figure out what tests will help rule out contributing conditions outside of hep C and can decide on any other specialists you should see.

Tell your care provider about any medications you are taking, as these may have side effects that make you tired. Also, you should discuss your sleep patterns. Be honest about any drug or alcohol use.

Your physician may refer you to either an internist or endocrinologist to check for conditions such as thyroid disease, which is relatively common among the hep C population. You might also visit a sleep specialist to detect problems such as sleep apnea that may be seriously interfering with sleep patterns. A psychiatrist or psychotherapist can help treat issues like depression and anxiety. And in the event that you are presenting symptoms of the pain condition fibromyalgia, which often goes hand-in-hand with chronic fatigue syndrome, you might see a rheumatologist.

Lifestyle Changes

“It’s very important to maintain an ideal body weight,” says Zobair Younossi, MD, MPH, chairman of the department of medicine at Inova Fairfax Medical Campus in Virginia, suggesting a diet that cuts out excessive fats and carbohydrates.

Obesity, as it happens, is yet another cause of fatigue, as is consuming alcohol, which physicians tend to advise those with hep C avoid entirely because it can damage the liver. Smoking—be it tobacco or marijuana—can also zap your energy.

Exercise, of course, is another important component of healthy living and weight control and it can help fight fatigue. Younossi recommends a baseline regimen of 30 to 45 minutes of aerobic exercise at least three times a week.

If this proves impossible, don’t despair. And don’t let a lack of energy lock you to the couch. One recent study found that simply walking can be highly beneficial. People with hepatitis C who hit 10,000 strides, or about five cumulative miles, three days out of the week saw significant improvements in fatigue levels. Try using a pedometer to keep track of your strides.

Then there’s the old stand-by, caffeine, which research suggests may actually help with more than just short-tern alertness.

“I think two or three cups of coffee is fine,” Younossi says, “and it may even help liver fibrosis.”

Those who have trouble sleeping, however, may want to consider a more conservative approach to caffeinated beverages.

“Sleep is key in everything,” says Diana Blank, MD, a staff psychiatrist at Toronto Western Hospital and a member of the hospital’s comprehensive hepatitis C team. So if the sleep pattern changes, then that’s enough to screw up someone’s life and have them become chronically fatigued.”

Outside of speaking to a doctor about medical solutions, some classic behavioral techniques for improving sleep include going to bed and getting up at the same time every day, only using your bed for sex and sleep, establishing a relaxing routine at bedtime, making sure you have a comfortable, dark, quiet and cool sleeping environment, and avoiding both caffeine later in the day and food before bed.

Putting Up With Treatment, Hoping for Relief

Because interferon’s side effects tend to be more intense for the first couple of days after each weekly injection, Andrew Aronsohn, MD, an assistant professor of medicine at the University of Chicago Medical Center, recommends that those with a weekday job administer the drug on Friday night. This gives a weekend cushion when they can recuperate and hopefully be more able to tackle work by Monday.

Blank counsels her patients undergoing treatment to focus on making it to the end zone and to put aside other battles in life until the difficulties of the interferon side effects are just an unpleasant memory. It’s important to prioritize your needs, she says, and also to set boundaries with the people in your life so that they know what they can expect of you.

Studies tend to find that achieving a sustained virologic response (SVR, considered a cure) for hepatitis C following treatment can lead to significant improvements in quality of life measurements, in particular fatigue levels, although the reasons for such improvements are not clear-cut.

“When I see a patient six months after treatment,” Aronsohn says, “and they tell me they’re feeling great, they’re back to work, they’re loving life, it’s always hard for me to know: Was this hepatitis C that caused their fatigue, or are they just psyched that they’ve been cured of a disease and they’re not on this horrible medication anymore?”

Younossi is currently conducting a study that may shed light on this conundrum. He’s found that even when people have been cured but don’t yet know it they report less fatigue—a result he theorizes may be the consequence of diminished levels of cytokines.

Learning to Cope

When living with a chronic illness, it’s crucial to find sources of support, Blank says, especially when you’re not feeling well. While seeing a therapist or attending a support group is one way to help you cope, engaging the people in your everyday life is also vital.

“As fatigue kicks in, what I’ve noticed is that people start slowing down,” Blank says. “They feel guilty about admitting it. They try to do too much. The families expect it too, because they don’t necessarily understand it. Then the relationships start breaking down.”

As a psychiatrist, she’ll often bring in the whole family to counsel them about the disease and about what kind of expectations they can have of their loved one.

“If they understand, they’ll appreciate it when you’re going through a hard time and they’ll be able to help, either emotionally or physically,” she says.

“I find that patients have good days and bad days,” says Andrew Muir, MD, a hepatologist at Duke University. “I recommend they listen to their bodies. They need to enjoy the good days and yield to the bad days. Fighting through it does not work.”

The stress of living with a disease as uncertain as hepatitis C can easily weigh a person down, acknowledges Blaire E. Burman, MD, a gastroenterology and hepatology fellow at the University of California, San Francisco, but she sees great promise in the new therapies that will likely come to market during the next few years.

“I think that as new and improved interferon-free treatments are approved for use, we will be able to treat and cure many more patients and with a less toxic course,” she says. “So I would encourage HCV-infected patients to keep a positive attitude about their chances of a cure. I think hope goes a long way.”