In collaboration with French Association SOS Hepatitis
This article is taken from the SOS Hepatitis brochure “Being Hepatitis # 8: Is it in my head or is it hepatitis?”
It is now demonstrated: chronic hepatitis C can lead to significant physical and psychological malaise, which can take different forms: fatigue, anxiety, aggression, depression … This situation is often lived alone because it frequently causes misunderstanding among surroundings. Few people know that these manifestations can be directly related to their disease. Many feel helpless and fail to evoke these problems, or underestimate them. However, there are solutions to help you identify these symptoms, talk to your doctor and treat them, or at least reduce the impact on your daily life.
I always feel tired. Is it normal?
Tiredness is one of the most common symptoms of hepatitis. Its intensity does not depend on age, nor the activity of the virus, nor the severity of the lesions of the liver. Our fatigue is not linked to an effort or a change in our pace of life. It is often cyclical and does not disappear after rest (or incompletely). We may feel exhausted as soon as we wake up, or have a lot of tiredness during the day for no reason. Some days, fatigue is permanent. We also have a lot more trouble recovering from our daily activities. Work is underway to determine the biological mechanisms that explain the link between fatigue and the presence of the hepatitis C virus (HCV).
Tiredness and lack of vitamines?
Asthenia (severe fatigue) can be linked to another cause than hepatitis: diabetes, hypothyroidism, vitamin or trace element deficiencies, excessive consumption of alcohol, insufficient or unbalanced diet. The doctor may recommend tests to check that your fatigue is not the consequence of any of these problems. Warning: do not take supplements or vitamins without medical advice; some of these over-the-counter products may be toxic to the liver.
Tips and tricks
Sleep disorders are common in hepatitis. Sleeping pills are not recommended for a long time, do not hesitate to discuss other methods with your doctor: homeopathy, relaxation, shiatsu … If you suffer from joint, muscle or lumbar pain, your doctor may prescribe you physiotherapy sessions. Pain disrupts sleep, which can lead to depression.
Tiredness avoids me to live a normal life
Fatigue due to HCV has repercussions on physical, moral and social life. It often forces people to restrict their activities and social, love and family relationships can deteriorate. Sometimes it becomes difficult to manage everyday life. Hepatitis is asymptomatic: it is not visible physically. This gap between your appearance and your state of fatigue causes misunderstandings from your loved ones: they find you “in good form” while you feel incapable of the slightest action. If people around you do not know enough about the extent of fatigue in Hepatitis C, your attitude may be interpreted as laziness or ill will. Sometimes you cannot stand that your loved ones do not understand your malaise. Help them better understand your difficulties: explain illness, offer them to accompany you to your GP.
Being able to describe your tiredness
Everyone complains of being tired, even your doctor! But the fatigue of a hepatitis is very specific: some health professionals are not sufficiently aware. If your doctor does not listen to you, try changing your speech and vocabulary. Instead of saying “tired”, use other words: exhausted, exhausted, exhausted … Illustrate the impact of this fatigue on your daily life by concrete examples: you cannot vacuum, you must stop at each floor to go up the stairs, carry a shopping bag you have become impossible, etc.
I feel different than before. Hepatitis changed my behavior and my relationships
Physiologically, some doctors think that HCV acts on brain cells: this could explain mood disorders, memory loss and difficulty concentrating. In addition, a chronic illness always causes upheavals in the affected person and his entourage. Being infected with a virus can lead to feelings of shame, revolt or anger directed against oneself or against others. Some discover a touch of emotion: they become very irritable, or on the contrary fall in tears in front of the news on TV. The acceptance of the disease is a slow and complex process: a psychotherapy is a real support, do not hesitate to consult.
Tips and tricks
While this may require some effort, try not to fall back on yourself. Keep in touch with the outside and the others, move. Sport is not contraindicated, on the contrary: to everyone to see what he is able to do. You can practice yoga, tai chi or other relaxing disciplines … Find an activity that you like and really relax: it should not be a chore or an additional constraint.
What if it is depression?
Depression is common in people with hepatitis C, not just during treatment. First, the shock experienced at the announcement of the disease can have long-term consequences. The intense tiredness can also lead to a real depression, because it sometimes involves radical changes of life: a slowed or interrupted professional life (loss of job, repeated work stoppages, change of position), a difficult household management, disturbed relationships (spouse, children, and parents), and very limited leisure activities. These changes due to illness can lock up the person with a feeling of social uselessness, rejection, fear of the future … Finally, the disease is sometimes a catalyst: it amplifies the psychological weaknesses that existed before the discovery of the disease.
It is very important to spot the signs of depression. Sadly, they are frequently neglected by the medical profession and by the patients themselves. Management is often late and healing longer. It is difficult for the person to self-assess: the entourage must be alerted and vigilant, because a depressive episode can quickly worsen if it is not diagnosed.
I need help, but I don’t know who to talk to?
Talk to your GP first, who can refer you to a specialist, psychologist or psychiatrist. Some people do not dare to approach this subject because they think that their psychological disorders have nothing to do with hepatitis C, or that the “psychiatrists” only treat crazy people.
Do not be ashamed to seek help, even as a precaution. Under antiviral treatment, psychological disorders can set in and get worse quickly. It is therefore important to set up psychological support as soon as the disease is discovered. This will help you to cope better, in good time, with the possible difficulties caused by antiviral treatment. In some gastroenterology departments, there are free consultations with psychologists and psychiatrists, especially for people with hepatitis C and their relatives. Ask an association. Participating to a speaking group of people affected by hepatitis can also help you.
Writing : Marianne Bernède
Scientific validation : Pr Pierre Opolon, Dr Pascal Melin, Dr Marie-Noëlle Hilleret