Hepatitis can affect more than just your liver; sometimes it affects your whole life, from how you see it to how you live it. Some people feel angry, sad, confused, or frightened when they learn they have hepatitis. You may feel like you’ve lost control over your life. People who know your diagnosis may seem to treat you differently, from your mother to your best friend.
Suddenly, your doctor has advice about every aspect of your life, from your work habits to what you eat. You may have to limit or even give up activities you’ve always enjoyed. You can’t get it out of your mind.
But it doesn’t have to be that way. Although having hepatitis might mean you have to make some changes in your life, it doesn’t mean you have to stop living your life. Each patient with hepatitis faces different challenges, but today there are also more effective treatments, better ways to relieve symptoms and side effects, and a growing number of professional and community supporters to help you face those challenges. You just have to find your way past the feelings that get in the way of progress, such as anger and fear, and start taking the steps you need to improve your life despite hepatitis.
Although having hepatitis might mean you have to make some changes in your life, it doesn’t mean you have to stop living your life.
The more you know about hepatitis, the better you can control how it affects you both physically and mentally. The fact is, you can’t separate the two. In this chapter, you’ll learn about positive ways to deal with negative feelings, and how to influence your mind to help you improve your overall health.
Your body affects your mind
– The physical effects of the virus can leave you feeling tired and emotionally drained.
– Side effects of medication as well as symptoms of the disease can make you irritable or dull your thinking power, leaving you feeling confused.
And your mind affects your body
– Your feelings can affect your actions. If you’re upset about being sick, you might not do what you have to do to get better.
– Stress can weaken your body’s immune system, lowering its ability to fight off the disease.
Many of the bad feelings that go along with having hepatitis, such as the grief and depression, the anger, fear, and the anxiety come from not knowing what to expect. You can change that.
Start by learning everything you can about the virus, from how it affects millions of people in all walks of life, to how new treatments are offering greater hope for a cure. Reading this handbook is your first step. You can also surf the Internet for information. (If you don’t have a computer at home, check your local library to see if you can use one there. But remember that there are many sites with questionable information, so choose the information you use carefully, and check it with your doctor.) find a physician who knows about the disease, such as a gastroenterologist (a specialist in diseases of the stomach, intestines, and liver) or hepatologist (a specialist in liver disease), and talk to him or her about treatment options. Get answers from people who know what they’re talking about.
Recognizing grief and depression
It can be a shock to learn that you have an illness, especially one with no symptoms, no warning, and sometimes no explanation about where it came from. It” normal for you to feel sad and to miss the life you had before your diagnosis, when you didn’t have to think about doctors and medication and treatment.
Feelings of emptiness, hopelessness, and sadness are common responses to the news. So are feelings of worthlessness and even guilt about being sick. Some people lose interest in their favorite activities, from socializing to sex.
Depression is one of the most curable diseases of mind or body, but the key to getting better is reaching out to get help.
They eat or sleep much more or much less; or gain or lose a lot of weight. Some people feel overwhelmingly tired. Some find themselves thinking about death. If these symptoms stretch beyond a couple of weeks, or if they get more severe and interfere with daily life, it may be more than just sadness that you can get over on your own and may be a clinical depression that needs to be treated. In this case, you need to talk to your doctor and/or a mental health specialist.
The depression can leave you feeling that you can’t even function at all. Or it can come out in the form of anger, impatience, and hostility toward others around you – or even toward yourself. (See checklist on page 65.)
Depression is one of the most curable diseases of mind or body, but the key to getting better is reaching out to get help. It isn’t always easy to open up to a stranger, but a mental health professional familiar with the stress of hepatitis can guide you to healthy ways of coping with the disease: talking it out, getting involved in fun activities, finding a network of support, helping you build a positive attitude, or even providing informed answers to your medical questions, simply letting you know it’s not hopeless after all. This approach is often all that is needed if your depression is mild.
Sometimes depression is related to chemical changes in your body, and antidepressant medications may help. Check with your physician before beginning any antidepressant medications.
Symptoms of clinical depression
Everyone can answer “yes” to some of these questions some of the time. But if you find you’re saying “yes” to more than 4 questions and the feelings aren’t going away, you may be depressed. Remember, depression doesn’t have to become a permanent part of life. But beating depression calls for getting the right help.
– Do you feel sad, anxious, tearful, irritable, or hopeless for most of the day, almost every day?
– Have you lost interest in eating, sex, socializing, or your favorite activities?
– Are you eating more or less than usual? Have you gained or lost weight?
– Are you sleeping more or less than usual?
– Do you feel as if you’re talking or walking in slow motion?
– Do you fidget constantly or find yourself incapable of staying still?
– Are you always tired? Are you too weary to tackle even small chores?
– Do you feel worthless or guilty about something?
– Are you having problems thinking, concentrating, or making decisions?
– Have you been thinking more and more about death? Do you have thoughts of giving up or wanting to die?
If you think you might be depressed, talk to your doctor. He or she can refer you to a mental health professional to help you manage your depression.
Coping with anger
No matter how you got hepatitis, or how long you had it before you were diagnosed, it’s a diagnosis that can leave you feeling angry at the world. Maybe you were always careful about your health but ended up getting sick after a blood transfusion. Maybe you discovered that your partner infected you during sex. If you suddenly learn that you’ve had the disease for years, you may be angry with yourself because you feel that somehow you should have known. All kinds of troubling thoughts may cross your mind.
It is important for you to get help so you can look forward. An experienced counselor or a structured, professionally run support group can help you turn your negative feelings into a positive form of strength, and help you to accept having the disease. (See Resource List for information on support groups.) You can turn your anger into strength and put it to work for you through physical activities (such as a moderate exercise program or organizing your home). Financial and legal papers are also important to organize so that you can manage your finances better and be prepared if you need documents to support your request for time off or government aid. (See Chapter 11.) These are things you can do that can have a positive effect on your life and may make you feel better.
Making a simple to-do list, where you check off items as they are done, or setting up a chart that shows the progress for “miles walked,” can be good to help yourself feel positive about accomplishments and stay motivated.
Pushing fear and anxiety aside
A lot of fear has to do with not knowing: What’s going to happen next? Will I be all right? What will people think of me? How will my friends treat me now?
There are fears of rejection by others: Who should I tell? What should I say? When should I break the news to the person I’m dating, who might be at risk? Will they be more supportive of me or less? How will it affect my job? (See Chapters 10 and 11 for discussions about coping with these situations.)
Even the feeling of fear itself can be frightening. But the physical effects of fear – the pounding heart, trembling, and troubled sleep – can be controlled. Sometimes, these symptoms are just the side effects of medications or drugs unrelated to your illness. However, they may also be related to some of the medications you’re taking to treat your hepatitis. Remember to speak to your doctor about any symptoms that you think may be side effects of medications.
Anxiety is a lot like fear. It is a feeling of uneasiness or tension in response to a real or imaginary threat. The signs and symptoms are mental and physical:
An experienced counselor or a support group can help you turn your negative feelings into a positive form of strength.
Helping others in the same situation not only takes your mind off your own problems, it helps you to feel good about yourself.
– Mental symptoms can include impatience, restlessness, inability to relax, difficulty concentrating, trouble sleeping, and lack of enjoyment of thins or activities you once enjoyed.
– Physical symptoms can include dry mouth, nausea, sweating, dizziness, diarrhea, constipation, muscle aches, sexual difficulties, rapid heartbeat, and shortness of breath.
Mild anxiety may have a good effect, if it prompts you to take better care of yourself. But if it continues, anxiety can do harm. Again, finding out the answers to many of your questions can be the first step. Many times we imagine the worst, and the reality is not as bad as we thought it would be. Also, by finding out the answers, you learn that there are things you can do to make the situation better. Talking helps. And there are ways that you can decrease the symptoms of anxiety. You first need to identify the symptoms you have, and then, with help, find ways to combat them.
How can I take care of myself?
You are not alone.
Feeling as though you’re the only one in the world who’s going through this can make everything seem worse. Support groups, when available, can help, not only by putting you in touch with others in your situation, but by keeping you up-to-date on helpful information about the disease. Some support groups follow a formal structure, and include healthcare professionals specifically trained to help with the anger, depression, fear, and other emotional issues that a diagnosis of hepatitis can prompt. Others are more informal groups of people with hepatitis in particular, or with any other chronic illness, who share their experiences in an effort to help others while helping themselves.
Support groups can offer important emotional help by allowing you to blow off steam in a safe place where others who have gone through what you’re going through accept you without being critical. They can relate to the fatigue or the overall sense of just feeling bad that family, friends, and coworkers may not fully understand. It may, unfortunately, be difficult for you to find a support group in your area, but it is still worthwhile to try.
Being in a support group can also help you by allowing you to help others. Helping others in the same situation not only takes your mind off your own problems, it helps you to feel good about yourself. The American Liver Foundation may be able to help you find a support group in your community or tell you how to start one of your own. Your doctor and nurses may also serve as resources. (For more resources, including how to contact the American Liver Foundation, see Resource List.) Finally, a local mental health clinic or professional in this field may sponsor such groups, but this may require a fee from you to participate.
There are a number of actions you can take to get yourself into the right frame of mind. And having a good mindset, as mentioned earlier, can help you physically, as well as emotionally. Work as many of the following suggestions as you can into your daily life.
– Get enough rest – 6 to 10 hours a night.
– Eat small, well-balanced meals throughout the day.
– Try to get some form of regular exercise, following your doctor’s advice.
– Have very little caffeine and no alcohol. Drink plenty of water – 4 to 8 glasses a day.
– Talk things out with a counselor, friend, priest, rabbi, or support-group peers.
– Avoid stressful situations. If there’s too much for you to handle at work, ask for help. If Aunt Mary’s concern is causing your stress instead of reducing it, stay away, or find a way to accept and appreciate her concern and let her help you.
– Seek out positive-minded people and activities, such as listening to music, walking, and developing hobbies.
– Find an outlet for angry feelings, such as new hobbies or activities.
– Use relaxation techniques, such as meditation and deep breathing.
Remember, there are many things you can try to lift your mood, and even clinical depression is usually treatable today. Once you have taken care of such problems, and learned positive ways to control troubling feelings, you’ll be in a better position to improve your overall health.
Of course, how your family and friends react to you can have a big effect on how you face this challenging time. In Chapter 10, you’ll learn about how best to share this news with those closest to you.
Q U I Z
Q. What are the main ways that your body affects your mind?
A. The physical effects of the virus can leave you feeling tired and emotionally drained. Also, side effects of medications can make you irritable or dull your thinking power.
Q. What are the main ways that your mind affects your body?
A. Your feelings can affect your actions, keeping you from doing what’s best for you. Also, stress can weaken your body’s resistance, lowering its ability to fight off the disease.
Q. What are two ways of finding a support group?
A. The American Liver Foundation (see Resource List) or a healthcare provider may be able to refer you to a local support group.
Q. What else can cause the pounding heart, trembling, and troubled sleep that sometimes accompanies fear?
A. These symptoms can be caused by, or increased by, the side effects of medications, or drugs such as caffeine, alcohol, or cocaine.
– Cut yourself some slack, but don’t wallow in self-pity. Make a list of things you can do to improve your situation or make a set of health goals that include exercise and better nutrition. You’re facing a major change in your life and it will take time to get used to it.
– Talk to friends, or try stress-reduction activities like meditation or yoga to see what works for you.
– Look for a support group to join, or ask your doctor if he or she can suggest how to find one.
– Make changes to your lifestyle one step at a time. Eat a balanced diet, get more rest, and start exercising lightly. Don’t drink alcohol or smoke cigarettes, and cut back on your caffeine intake.
Help someone else. You have something to offer, and by helping others you help yourself, too. You can get involved in fundraising or other activities, perhaps through the American Liver Foundation, or other local public health organizations.