Many emerging illnesses, before they have gained acceptance by the medical community, have initially been discounted as being hysteria, depression, etc. Before the hepatitis C virus was identified in 1989, many of its symptoms were correlated to depression, and many un-read physicians today still believe that HCV is normally asymptomatic.
Another issue is that HCV patients can get “secondary depression” if their lives have been disrupted because their illness has interfered with their job or their social or family life. This indirect consequence of the illness may be taken by some medical professionals as indicating a cause rather than an effect of the observed symptoms.
An article in Hepatology, June 2000, p. 1207-1211, Vol. 31, No. 6, “Hepatitis C, Interferon Alpha, and Depression,” the authors note that “two separate lines of evidence support an association between HCV and depression. First, patients with psychiatric disorders have a higher prevalence of HCV infection. Second, patients with chronic hepatitis C may have a higher prevalence of psychiatric disorders including depression.”
Many people never fully appreciate their health until they suddenly have to face the fact that they now have an illness that is not going away. This new state of affairs can make you feel angry and depressed, and it’s hard to get beyond the question “Why me?”
People commonly work through what Dr. Elisabeth Kubler-Ross has identified as the five stages of adjustment as they learn to accept a chronic illness. There are feelings of denial, anger, depression, bargaining and acceptance. All of these feelings are natural, and there is no fixed time schedule for your passage through the stages, and many times the stages overlap.
Realize that you have to experience the pain in order to work through it. Don’t try to hide the physical and
emotional hurt. Experience the pain and then let it go. Don’t be afraid to express the hurt you feel.
Learn to laugh; try to see humor in your situation, and to enjoy the simple pleasures of life.
Keep the lines of communication open. It helps to know that someone understands how you’re feeling and can help bear the load.
Don’t neglect your personal “self-time.” Being alone can provide a personal perspective from which calm, wise judgments, opportunities for personal growth, and a new optimism about life can emerge.
Don’t hesitate to seek counseling for your special situation.
Some problems are too big to work through on your own.
Take responsibility for yourself and realize that you DO play a role in your illness.
See Section 10.3.0c below
Anger is a known side effect of liver disease. And just being sick and tired and achy just about all the time does not help. What helps is slowing down. But most of us can’t. If we do we won’t be able to eat and pay the rent.
People with symptomatic HCV should be on disability pensions. They should have home care, and day care provided for their children. They should have help cleaning their homes and doing the shopping and cooking.
When you are tired and achy and nauseous and dizzy, getting caught up in the day-to-day aspects of life becomes increasingly difficult. Often you feel like you have cement in your blood. You feel so heavy.
So when you feel overwhelmed by the welfare system, or a doctor, or a bank clerk or whomever, it’s no wonder you just might explode.
The best thing is to have a friend who understands. Joining a local support group really helps.
What sex life? ☺ See “Loss of Libido” above.
Tips for coping with having a family member with hepatitis C
- You cannot cure your family member.
- Despite your efforts, symptoms may get worse, or may improve.
- If you feel much resentment, you are giving too much.
- It can be as hard for you to accept the illness as it is for the ill family member.
- Acceptance of the disease by all concerned may be helpful but not necessary.
- You may learn something about yourself as you learn about a family member’s journey through illness.
- Separate the person from the virus. Love the person, even if you hate the virus.
- Separate medication side-effects from the disease/person.
- It is not OK for you to be neglected. You have needs and wants, too.
- Your chances of catching hepatitis C from casual contact or sexual contact with a family member is extremely low, providing proper precautions are taken to avoid contact with blood.
- he illness of a family member is nothing to be ashamed of. Reality is that you may encounter discrimination from an apprehensive public.
- No one is to blame.
- Don’t forget your sense of humour.
- It may be necessary to revise your expectations.
- Acknowledge the remarkable courage your family member may show dealing with the illness.
- Your family member is entitled to his own life journey, as you are.
- Survival-oriented response is often to shut down your emotional life. Resist this.
- Inability to talk about feelings may leave you stuck or frozen.
- The family relationships may be in disarray in the confusion around the disease. It may be necessary to renegotiate the way things have been done in your relationship, both emotionally and physically.
- Recognize that a person has limited capabilities should not mean that you expect nothing of them.
- You may experience grief issues about what you had and lost, or about what you never had.
- After denial, sadness, and anger comes acceptance. The addition of understanding yields compassion.
- Diseases are a part of the varied fabric of life.
- It is absurd to believe you may correct a physical illness such as hepatitis with talk, although addressing social complications may be helpful.
- Symptoms may change over time, while the underlying disorder remains.
- The disorder may be periodic, with times of improvement and deterioration, independent of your hopes or actions.
- Don’t shoulder the whole responsibility for your ill family member.
- Forgive yourself and others for mistakes made.
- Physicians have varied degrees of competence.
- If you can’t care for yourself, you can’t care for another.
- The needs of the ill person do not necessarily always come first.
- It is important to have boundaries and set clear limits.
- Chronic illness affects the entire family, not just the person who actually has the disease.
- It is natural to experience a cauldron of emotions such as grief, guilt, fear, anger, sadness, hurt, confusion, etc. You, not the ill member, are responsible for your own feelings.
- You are not alone. Sharing your thoughts and feelings with others in a support group is helpful and enlightening for many.
- The chronic illness of a family member is a trauma for the entire family. You pay a price if you do not
receive support and help.
Support your local hepatitis C group and the search for a cure!
People with hepatitis C tend to hear a lot of - well...there’s no nice way to say it - “Crap” from usually well
meaning people. We understand that most people really do want to help, but sometimes they just don’t
seem to think before they speak.
Here are a few of the “Worst” things you can say to your HCV-positive friend:
- “Will you stop that constant whining”?
- “You just need to get out and exercise more.”
- “It’s all in your head.”
- “No one ever said life was fair.”
- “Stop feeling sorry for yourself.”
- “There are a lot of people worse off than you.”
- “You think you’ve got problems...”
- “Maybe you should eat better/take vitamins.”
- “There is always somebody worse off than you are.”
- “Cheer up!”
- “You’re always feeling sorry for yourself.”
- “Have you been praying/reading the Bible?”
- “You don’t look sick!”
- “Everybody knows HCV doesn’t have any symptoms. You’re just looking for attention.”
- “That which does not kill us makes us stronger.”
- “Believe me, I know how you feel. I was sick once.”
- “So, you feel sick. Don’t you always?”
- “Oh, cheer up!”
- “Go out and get some fresh air... that always makes me feel better.”
- “It doesn’t matter what your experience was with biopsy, interferon, side effects of treatments, you HAVE to get the treatment/procedure done. I don’t care about your excuses.”
- “Gosh... I would love to be a couch potato and not work all the time; it’s not such a hard life that way.”
- “I only want to hear good news.”
Do you really want to help? Here are a few of the “Best” things you can say to your HCV-Positive friend:
- “I love you!”
- “I Care”
- “You’re not alone in this”
- “I’m not going to leave/abandon you”
- “Do you want a hug?”
- “Don’t say anything, just hold my hand and listen.”
- “I’m sorry you feel so bad. I am not going to leave you. I am going to take care of myself so you don’t need to worry that your pain might hurt me.”
- “I listen to you talk about it, and I can’t imagine what it’s like for you. I just can’t imagine how hard it must be.”
- “If you need a friend ” (and mean it)
- “Is there anything I can do to help?” (and mean it)
- “I am going food shopping tomorrow. Give me your list and I will pick up everything for you and bring it home to you and put it away.”
- “I don't care if you get tired and cranky. I love you and spending time with you is still fun.”
- “I will be over in half an hour with (you put it in) dinner, a video, and then I will leave so you don't have to entertain me.”
- “It’s okay, you don't have to be brave for me. Let me be the strong one for a while.”
- “It is a gift to me that you permit me to help and support you. I know how hard it is for you to ask for
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