By Barbara Hermie Draimin, DSW
|Shame, Guilt,and Stigma|
|What Is Stigma?|
|Pulling Together and Showing Love|
Karen wondered if her life would ever return to normal. Since her father got AIDS, it seemed that everything had changed. Even her grandmother, who had been the rock of the family, was upset. She blamed her son-in-law for getting the disease and was sure he would give it to her daughter. The Sunday trips to Grandma’s were not as frequent and not as much fun.
John’s mother had had cancer for three years. He knew what it was like to have his world turned upside down. He was bothered that his dad had been so secretive about Mom’s illness. Was there any reason to be ashamed?
Sickness changes families, but not just for the worse. When families have major life crises such as sickness or death, both bad and good things happen. Shame, guilt, and stigma are some of the bad things. Pulling together and showing love are some of the good things.
John’s mother had cancer and his father treated it like a secret. John wondered why family members felt guilty about something over which they had no control. They never used the word cancer, as if pretending she didn’t really have it.
Many adults have no idea how to handle a serious illness and death. They are overtaken, and they react, react, react. They run here, there, and everywhere without taking time to sit down and think about what is happening. It is often the first time in their lives that something has happened that can’t be fixed.
Most problems have solutions. It may take time, work, money, or life changes, but most problems can be fixed. Serious diseases cannot always be controlled and sometimes can’t be fixed. If adults have not dealt before with sickness and death, they are often thrown off balance.
Some families face the problem and go to their church or mental health worker or friends for help. But other families retreat and keep the secret.
No one deserves to be sick. No one wants to be sick. Whether it is AIDS or cancer or any other illness, the family did not do anything to deserve it.
Sometimes children think that they have done something to cause the illness. This is not true. When children can see the illness but are told nothing is wrong, they sometimes get confused and blame themselves. Children are not the cause of illness. If a child steals or lies, that does not cause illness. If a child does badly in school, skips school, or doesn’t come home from school to be with the parent, it is not his or her fault if anything happens.
Bad things sometimes happen. Everyone wishes they didn’t. But children can’t cause someone to get sick, and they also can’t make someone get better.
Stigma means shame or dishonor or blot or stain. It means that someone tries to make you feel bad about something. If you are the only one in your class with a sick parent, some students may look at you funny. If you are the only black student in a white school, some people may make fun of you. Stigma is a bad feeling that someone sends your way because they think something is wrong with you.
There are two things you can do if people treat you badly. You can tell them that they are hurting you and ask them to stop. Or you can turn the other cheek and know that they have a problem— not you.
AIDS carries the most stigma of any disease. First, there are many myths about AIDS, and people are still afraid of getting it through casual contact. Second, it is carried by unsafe sex and drug use. Our society is not very good at talking about sex and drugs, so people do not want to talk about AIDS. Third, even though anyone can get AIDS from unsafe sex or drug use, certain groups of people have been hit hardest by the disease. To date, homosexual men and drug users have been hardest hit. Many people with AIDS are black or Hispanic. There is hate and prejudice against homosexuals, drug users, and people of color. Some people blame those with AIDS for having the disease.
Stigma and discrimination are ugly aspects of AIDS. People like Arthur Ashe, Ryan White, and Magic Johnson have all tried to make people think sensibly. Movie and music stars also have helped.
Many people are still afraid and are angry at people with AIDS. It is important for you to know that. The really bad part about stigma is believing that the person who treats you badly is right. If people don’t like you because someone in your family has HIV; that is mostly their problem. But if you agree with them and start not liking yourself, the problem is yours, too.
People who are sick don’t need blame. They need help. No one deserves AIDS or any other illness. Illness is not a punishment.
It is important for everyone to learn about illness and death and how to deal with them because they will happen to us all. It is also vital to learn about AIDS so we can prevent it and help others who have the disease.
A good thing about illness and hardship is that they can bring people together. Family members often take one another for granted. They act as if everything will always stay the same. But life takes many unexpected turns. These turns cause us to realize what we have and appreciate it more. AIDS has brought many families together. It has given them a chance to express their love for one another. Many families with AIDS have gotten help from friends, neighbors, churches, and social service agencies.
When bad things happen, some families fall apart for a while. But most families recover and begin to pull together in a new and loving way. Many people stop taking drugs when they are diagnosed with AIDS. They want to take better care of themselves. They have a new desire to live free of drugs and enjoy their loved ones. AIDS is not all bad. Often good things happen. When people pull together and focus their lives on love, faith, and support, it feels good. Some of the things that once seemed important no longer matter so much.