AIDS: wrestling with fear and grief

The personal, emotional, and familial trauma of AIDS

Millie White is a case manager at Chattanooga Cares in Chattanooga, Tennessee.

I thought it'd never happen to me.

I was safe, that's what mattered.

Then they told me I was "HIV,"

And my whole world was shattered.


I hovered, crying there for hours.

My heart was torn and tattered.

I questioned why from higher powers,

And yet my life was shattered.


I cried, I wept, I begged, and screamed

Emotions wild and scattered.

The worst news I had ever dreamed

Was the pain that left me shattered.


I know the facts, I know the deal,

And my soul lies bruised and battered.

Yet few could know just how I feel,

Afraid. . . alone . . . and shattered.

—MWE, 1995

Tornadoes, floods, blizzards, earthquakes, bombings, fires cataclysmic disasters alter people's lives swiftly and permanently. But what about the events that attack the body and sear the soul? The disaster that shatters an increasing number of lives is HIV (human immunodeficiency virus) and AIDS (acquired immune deficiency syndrome). In the mid-1990s AIDS became the leading killer of all Americans aged 25-44. Among those aged 15-24, AIDS is the seventh-leading cause of death in the United States. In the same nation, every 30 seconds, a woman is infected with HIV; every two minutes, a woman dies of AIDS. According to the Centers for Disease Control and Prevention in Atlanta, one in every 250 Americans is infected with HIV. Behind the alarming statistics and dismal headlines are real human beings fighting against seemingly insurmountable challenges as they live and thrive with HIV/AIDS. It is a disease that knows no bounds.

The basics of life

A person's life is irrevocably altered once he or she has become infected with HIV. Of course, many people do not even know that they are infected, because they feel perfectly healthy. In fact, it takes an average of 8 to 11 years for a person to progress from being HIV positive to having AIDS. As the body begins to weaken from the onslaught of HIV, individuals must face changes that will alter their lifestyle in simple and radical ways. Many PWAs (persons with AIDS) have to reduce their working hours and eventually quit altogether. Intermittent illness and doctor's appointments can make it difficult to maintain a rigorous work schedule. It is especially difficult to work around one's illness if one does not feel comfortable revealing it to an employer. Eventually most victims in the United States apply for Supple mental Security Income/Social Security Disability. The process is complicated and delivers barely enough for a person to survive. It can be both humbling and humiliating for hardworking people in their prime to obtain federal assistance.

The loss of employment brings other changes. People may have to find cheaper housing. That may mean applying for government housing or moving in with aging parents or other relatives. Others may have no place to go and end up living on the street. Sadly, some may not even be able to get into a nursing home when they become too ill to care for themselves. Decisions also have to be made regarding health insurance and medical treatment. If a person was receiving health benefits through work, they may have to apply for Medicaid (U.S. government assistance program) once they leave work. Most private insurance companies will not cover people with HIV/AIDS. This makes it more difficult to get good medical care. Many doctors do not want to deal with Medicaid red tape or with the complexities of the HIV disease. Doctors who are uncomfortable dealing with the disease do not aggressively help AIDS patients fight the disease and cope with the ravages of its fallout. By the time a person develops full-blown AIDS, they are on a treatment regimen consisting of a massive number of pills. They are forced to cope with drug interactions and side effects that can affect their moods, appetite, and freedom to perform daily activities. Finally, many people have to learn to live on limited budgets that barely allow for the essentials such as food and clothing. Food stamps and assistance from local food banks can be very helpful. Unfortunately, PWAs are often unable to eat nutritionally, which is very important for people with compromised immune systems. People in the United States and many other countries can obtain clothing from local service agencies. Any unexpected expenses can put PWAs in a crisis situation with few options.

It's all in your head

Many of the changes in a PWA's life are psychological in nature. Perhaps one of the biggest heartaches brought on by HIV is whether or not to reveal one's illness. A person must decide to whom they are going to tell and how they are going to tell them. They also have to be willing to risk rejection, fear, and disapproval. People often blame themselves for becoming infected, and feel a desire to hide the behavior that was associated with the infection, such as drug use or sexual activity. It takes great courage to face one's situation honestly and to move beyond denial to coping with the crisis. They also have to know enough about HIV/AIDS and its effects before informing others who may well have all sorts of questions and reactions to their announcement. They must also be ready to accept the fact that some loved ones will rally behind them while others will walk away and never look back.

PWAs also face the task of rein forcing current relationships as well as building new ones. Relationships are typically complicated and fragile; dealing with a catastrophic illness stretches relational bonds to the limit. It takes honesty to overcome the fear and stigma surrounding HIV/AIDS. Familial problems that existed before the person became infected with HIV tend to become magnified. Loved ones have to go through their own process of accepting and coping with the disease. They have to figure out how they will relate to the family member with HIV/AIDS. It can be hard to accept the person's lifestyle (for example, their drug use and/or gay friends). Family members also must face decisions on how they can best support the PWA while maintaining their own lives. Is the PWA going to move in with them? Are they going to help out financially? Who will care for the PWA if they become ill? If the family is going to survive intact, members must also deal healthfully with the stresses of being caregivers as the person becomes ill. Unlike other terminal diseases that cause a steady decline in one's health, HIV/AIDS is unpredictable. PWAs often ride a roller coaster of good health mixed with bouts of life-threatening illness. Caregivers must tread a fine line between treating the person with HIV/AIDS as being alive and active, and coping with chronic illness.

Once a person knows their HIV status, it can be very difficult to initiate new friend ships. They tend to feel like social outcasts. They may also hesitate to trust others if they feel nobody wants them any more. Many are afraid to reveal their status and are afraid that they might expose others to HIV. But having HIV does not take away a person's need for human relationships or their ability to change, grow, express emotion, and make commitments. Outlets for socialization tend to shrink when a person becomes HIV positive. Work opportunities may be eliminated. Churches can become unfriendly. Accessibility to restaurants, theaters, and other places of social gathering can become difficult as one's health falters.

Some have found comfort and friendship with local AIDS service organizations that provide support groups and activities. Others have chosen to let people know up front that they have HIV/AIDS. If after such a disclosure the friendship continues to grow, it is probably genuine.

Since the majority of people with HIV/AIDS are young, they must face the difficult task of continuing to care for their children in the face of a sometimes debilitating illness. This can be especially difficult for single mothers. Putting the needs of their children before their own becomes increasingly difficult.

Many have to decide whether or not to have children. This is a hotly debated issue, and there are no easy answers. While some PWAs do not want to risk dying before their children or passing on the virus to a baby, others feel that the risk is minimal (about 8 percent transmission of HIV from mother to baby if the mother is on AZT during pregnancy). Some would like to enjoy the pleasures of having a family as well as leaving a part of themselves behind. The number of children orphaned by AIDS grows every day, so it is crucial that everything possible is done to make the best arrangements for them.

Facing the attitudes of people

People with HTV/AIDS must face a daily barrage of attitudes born of ignorance, fear, and judgment. It often becomes their task to educate those around them. This can be grueling at best, especially when everyone seems to want to know the most intimate details about their lives (i.e., how they got infected, how they cope with it, how people treat them, etc.). Yet many PWAs have embraced the challenge and have be come outspoken advocates in their communities for those with the disease.

Many people infected and affected with HIV have also fought political battles in the war against the disease. In a climate of apathy toward anyone using the American "system," many social programs are being cut. Even major legislative measures are in jeopardy, such as the Ryan White Care Act and the Housing Opportunities for People With AIDS Act, which fund support services for thousands. Although much headway has been made in the medical treatment of HIV/AIDS, funding for additional research may be eliminated. Politicians tend to blame people for the circumstances in which they find themselves. Concerned individuals must continue to fight to ensure that all people have access to the assistance that they need.

Believing in somedays

Living with HIV/AIDS is a harrowing experience, but there are gifts amid the suffering. People faced with their impending demise often learn to enjoy the "precious present." So often, young people are constantly looking toward the future without savoring the here and now. Many PWAs have reevaluated their priorities and have made lifestyle changes to accommodate what is really important to them. In fact, some see their HIV positive state as a second chance to make things right and to live truly. Being chronically ill removes the illusions that one has control over one's life and that options are unlimited. Individuals often seek to repair damaged relationships and to reinforce healthy ones.

Wrestling with grief

People living with HIV/AIDS must wrestle with seemingly endless grief. There is personal grief over the many losses they have experienced, such as lost employment, lost time and opportunities, and severed relationships. It is also common to grieve their own impending death. Some who have lived with the virus for several years tend to experience "survivor guilt" because so many others with the disease have succumbed to it. Along with their own fears and struggles with HIV/AIDS, many PWAs face the loss of friends and/or relatives to AIDS. It can be very isolating emotionally to grapple with such major, ongoing losses. Others find it a real struggle to live with the disease and yet to be referred to as "the one dying of AIDS."

Laughter plays a crucial role in facing HIV/AIDS. It takes great strength and creativity to find something funny in the midst of night sweats, chronic diarrhea, and an often impersonal health-care system. Humor also leads the way toward healing. When fear is confronted and dealt with, it is easier to take on the problem. PWAs typically develop a zest for life that ordinary people do not share. Life is too short for them---they plan to enjoy it to the fullest despite their limitations.

In the United States and some other countries there is a dizzying array of treatment combinations and preventative therapy options for HIV/AIDS patients. There is research being done every day that may lead to improved medicines and possibly even a cure. A lot of PWAs cope with an uncertain future by educating themselves on the newest procedures and treatments. Many have taken to heart a slogan that was coined at the beginning of the epidemic: "Be here for the cure." Some are participants in clinical trials and are willing to try anything that may boost their health and prolong their lives.

Living with HIV/AIDS demands great courage and patience. Living in a "crisis mode" helps to develop these traits. The disease shatters thousands of lives each year, but many put the pieces back together again with the help of those who love them. Even though HIV may not be what they bargained for, it has not robbed them of their ability to share and to love.

AIDS is robbing our society of the amazing potential of so many---and we are all poorer without them. We must unite as men and women from ordinary, healthy family situations to fight the epidemic with courage, common sense, and love.

In general the church community has failed people infected and affected with HIV/AIDS. It is time for the church to take responsiblity for the compassionate care of those who have been neglected and ostracized by society. As Christ did, Christians must accept people right where they are without demanding that they change before assistance is given. In an era when social services may not or may no longer exist, the church has a precious opportunity to redeem itself and to make a great, positive impact on others.

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Millie White is a case manager at Chattanooga Cares in Chattanooga, Tennessee.

July 1996

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