People with HIV and their families and friends face a multitude of difficult realities. Even with the advent of antiretroviral (ARV) drugs, people with AIDS still die prematurely. Men who have sex with men and injecting drug users—who may already be stigmatized and subjected to social and job-related discrimination—may encounter even more societal pressure and stress with a diagnosis of HIV or AIDS.
Ninety percent of all adults with AIDS are in the prime of life and may not be prepared to deal with death and dying. The infections and malignancies that accompany AIDS—along with certain medications—can diminish and disfigure the body. People who are living with HIV face the need to practice “safer sex” and take medications for the remainder of their lives.
One thing that characterizes the grief around AIDS is the repetition of deaths that one person may experience. Many people working with or living with AIDS for years have gone to countless funerals and have seen a succession of their friends pass away. This is sometimes termed chronic grief. Chronic grief intensifies when an individual realizes that before the grieving process for one death is complete many more people may have died compounding the grieving process.
The idea of cumulative multiple loss or grief saturation is not new. The emotions felt by long-term survivors of HIV and their HIV-negative friends and families are similar to the emotions of the survivors of the Holocaust, survivors of natural disasters (earthquakes, tornadoes), and to battle fatigue described by soldiers.
Washington State has a system to link people with HIV infection and AIDS to care and support services. Case managers in the HIV/AIDS programs are the primary contact people for services. They can usually be found by contacting the local health department or health district. HIV-infected or -affected people can be linked with medical care, insurance programs, volunteer groups, hospice, and other types of care and support services that may be needed during the course of living with HIV. To find a case manager, contact the HIV/AIDS program in your county’s health department or district, or call the Washington State DOH at 877 376 9316.
- The fear of the unknown that many HIV sufferers encounter.
- The process of moving through the stages of grief.
- The psychological symptom of AIDS-related brain infection.
- The effect of cumulative multiple loss, or grief saturation.
Teaching Tip Sheet: Multiple Loss and AIDS-Related Bereavement
Physical weakness and pain can diminish a person’s ability to cope with psychological and social stresses.
HIV produces many losses, including loss of:
- Physical strength and abilities
- Mental abilities/confusion
- Income and savings
- Health insurance
- Housing, personal possessions, including pets
- Emotional support from family, friends, co-workers, religious and social institutions
- Self-sufficiency and privacy
- Social contacts and roles
- Self esteem
People experiencing multiple losses may feel:
Infection with HIV causes distress for those who have HIV and for their caregivers, family, lovers, and friends. Grief can manifest itself in physical symptoms, including clinical depression, hypochondria, anxiety, insomnia, and the inability to get pleasure from normal daily activities. Dealing with these issues may lead to self-destructive behaviors such as alcohol or drug abuse.
Disbelief, numbness, and inability to face facts occur for some. The fear of the unknown, the onset of infections, swollen lymph nodes, loss of weight (or unusual weight gain) can be accompanied by fear of developing AIDS, or of getting sicker. People infected with HIV/AIDS are often rejected by family, friends, or co-workers. In some cases, guilt develops about the disease, about past behaviors, or about the possibility of having unwittingly infected someone else.
People living with HIV may feel as though their “normal” lives have completely ended as they must plan detailed medication schedules and medical appointments. The cost of the medications for HIV may result in financial hardship, even if the person has medical coverage.
Sadness, hopelessness, helplessness, withdrawal, and isolation are often present. Anger is common: at the virus, at the effects of the medications or the failure of some of the medications, at the prospect of illness or death, and at the discrimination that often encountered. Some people with HIV consider suicide or attempt suicide, and some may actually kill themselves. Call the crisis hotline listed in your phone book, or call the National Suicide Prevention Lifeline at 800 273 8255 (273 TALK) or the National Hopeline Network at 800 784 2433 (800 SUICIDE).
Call the Washington State DOH at 877 376 9316 if you or someone you know needs help paying for HIV care and medications.
Caregivers may find it necessary to acknowledge their own experiences and feelings when dealing with all aspects of this disease. Good self-care for the caregiver is important. There are other issues for people who share a home with, or provide home care for, people with HIV or AIDS.
Often feelings experienced by the caregiver will mirror those of the patient; these can include a sense of vulnerability and helplessness. Caregivers may experience the same isolation as the person with HIV infection. Finding a support system, including a qualified counselor, can be just as important for the caregiver as for the person who has HIV disease. Support from co-workers can be especially important.
Stages of Grief
Grief has been described in a variety of forms. It may be best understood as a process that doesn’t involve a straight line. People do not move predictably step-by-step through the various stages of their grieving, but progress at their own speed. There seem to be discreet phases of grief, including:
- Shock and numbing
- Yearning and searching
- Disorganization and despair
- Some degree of reorganization
The length of time it takes to move between these stages is determined by individuals and their values and cultural norms. In uncomplicated grief, an individual is able to move through these stages and come out of the grieving process.
Complicated grief is described as an exaggeration or distortion of the normal process of grieving. People experiencing multiple losses are more at risk for complications. If an individual has been impacted by multiple deaths, it may be difficult to reorganize (move on) with the process.
Things to Do
- Do meet with a support person, group, or counselor on a regular basis to discuss your experiences and feelings.
- Do set limits in caregiving time and responsibility, and stick to those limits.
- Do allow yourself to have questions. Let “not knowing” be OK.
- Do get the information and support you deserve and need.
- Do discuss with your employer ways to reduce stress and burnout.
- Do remember that Standard Precautions are for the patient’s health and welfare, as well as your own.
Things to Avoid
- Don’t isolate yourself.
- Don’t try to be all things to all people.
- Don’t expect to have all the answers.
- Don’t deny your own fears about AIDS or dying.
- Don’t continue to work in an area where you can’t cope.
- Don’t dismiss Standard Precautions because you know the patient.
Although HIV infection affects people from all ethnic groups, genders, ages, and income levels, some groups have been significantly affected by the AIDS epidemic. These groups include men who have sex with men, injecting drug users, people with hemophilia, women, transgender people, and people of color. The following information details how these different populations may be uniquely affected by the AIDS epidemic.
Men Who Have Sex with Men
American society has issues with homosexuality. Grief may not be validated when relationships are viewed through prejudice and considered unacceptable. An example of this may be the reaction of churches to those who are living with, or have families living with, AIDS. Many congregants report that they do not get the support they need from their church families because of the stigma attached to HIV, AIDS, and homosexuality. Self-esteem issues and psychological issues, including depression, anxiety, diagnosed mental illness, and risk-taking behaviors, may also complicate the lives of these men.
Additionally, there are the issues with HIV-negative men who have sex with men. Most of the attention, resources, and services are focused on HIV-positive gay men. As with any behavior change, people can become “tired” of safer sex messages, and may make choices that place them at risk. Some may feel that HIV infection is inevitable (although it is not) and purposely engage in unprotected sex.
Men who have sex with both men and women (who do not exclusively self-identify as gay) face additional challenges. It is more difficult to reach men who do not identify as being gay with HIV prevention efforts and activities. Bisexual men face many similar challenges as gay men but may not have the social and community resources they need.
Women Who Have Sex With Women
Women who have sex with women, regardless of whether they self-identify as lesbian or bisexual, are at potentially greater risk than monogamous heterosexual women through their possible use of fingering, oral sex, and sex toys. The risk is lower than women who have sex with infected men because less bodily fluid is exchanged between women. Safer sex guidelines still apply, including avoiding any body fluid exchange through vaginal secretions, breast milk, or blood. It is important to avoid oral sex if either partner has mouth sores or cuts.
Heterosexual Transgender Women
These women have very specific risks because society at large is only now becoming aware of them. When their declaration of transgender is made, they often lose their family support system. Transgender women often face employment and insurance discrimination, and the cascade of rejections can lead to a higher likelihood of doing sex work (Operario, 2008). Until now there was a tendency to include these women in the category of “men who have sex with men,” which is not only inaccurate but also hides the particular reasons they are at higher risk.
Injecting Drug Users
American society also has issues with illegal drug use and with marginalized individuals such as those in poverty and the homeless. People who continue to use injecting drugs, despite warnings and information about risks, may be viewed by some as “deserving” their infection.
Harm reduction measures like syringe exchange programs, have been proven to reduce the transmission of bloodborne pathogens like HIV, HBV, and HCV. These programs are controversial because some people believe that providing clean needles and a place to exchange used needles constitutes “approval” of injection drug use.
In addition, poverty, self-esteem issues, and psychological issues (including depression, anxiety, diagnosed mental illness, and risk-taking behaviors) may also complicate the lives of injecting drug users. The desire to stop using illegal drugs may be very far apart from the ability to stop. The reality about inpatient treatment facilities is that while there is a large demand for spaces very few are available. Many substance abusers are placed on waiting lists when they want treatment, and by the time there is a place for them, they may be lost to followup.
People with Hemophilia
Hemophiliacs lack the ability to produce certain blood clotting factors. Before the advent of anti-hemophilic factor concentrates (“factor VIII” or “factor IX,” which are clotting material pooled out of donated blood plasma), hemophiliacs could bleed to death. These concentrates allowed hemophiliacs to receive injections of the clotting factors that they lacked, which in turn allowed them to lead relatively normal lives.
Unfortunately, because the raw materials for these concentrates came from donated blood, many hemophiliacs were infected with HIV prior to the advent of blood testing. During the 1980s, 90% of severe hemophiliacs contracted HIV or HCV through use of these products. There is anger within this community because there is evidence to show that the companies manufacturing the concentrates knew their products might be contaminated but continued to distribute them anyway.
Some people considered hemophiliacs to be innocent victims of HIV, but there has been discrimination against them. The Ryan White Care Act, funding HIV services, and the Ricky Ray Act, which provides compensation to hemophiliacs infected with HIV, were both named after HIV-positive hemophiliacs who suffered significant discrimination (arson, refusal of admittance to grade school) in their home towns.
Women with HIV
Women in the United States and worldwide are becoming infected with HIV at higher rates than any other group of people. This is particularly true of women of color. Women who are infected with HIV, or who have family members who have HIV, face some unique challenges.
Women may become infected with HIV from a partner who either used injecting drugs or had other sexual partners. Many of these women assumed that the relationship was monogamous, or that they “knew” their partner’s history. Many others are unable to discuss or implement safer sex practices because they lack the skills or because domestic violence is present in their relationship.
Women may postpone taking medication, or going to medical appointments, in order to care for their children or other family members. Women (and also men) may fear disclosing their HIV status to others, fearing loss of their jobs, housing, or other forms of discrimination. Single parents with HIV may feel particularly fearful because of their lack of support.
Many women have problems with lack of transportation, lack of health insurance, limited education, and low income. They may have childcare problems that prevent them from going to medical appointments.
Many women who are infected with HIV do not consider this to be their worst problem. Their symptoms may be mild and manageable for many years. Meanwhile, they may have more pressing concerns, such as their lack of income, housing, access to medical care, possible abusive relationships, and concerns about their children.
People of Color
African Americans and Hispanics have disproportionately higher rates of AIDS in the United States, despite the fact that there are no biologic reasons for the disparities. African American and Hispanic women make up less than 25% of the total U.S. population, but account for 77% of all reported AIDS cases in women. African Americans make up about 12% of the population, but account for 37% of all AIDS cases in the United States. Hispanics make up about 13% of the population, but account for 20% of the AIDS cases in the United States. In some areas, disparities also exist in the number of AIDS cases in Native Americans.
There is no single reason that stands out as to why the disparities exist. One factor is health disparities, which are linked to socioeconomic conditions. Another factor is distrust of the healthcare system. Both legacies of the past and current issues of race mean that many people of color do not trust “the system” for a variety of reasons. Thus, even when income is not a barrier, access to early intervention and treatment may be limited. And HIV may be only one of a list of problems that also includes adequate housing, food, and employment.
Another factor may be the diversities within these populations. Diversity is evident in immigrant status, religion, languages, and geographic locations, as well as socioeconomic conditions. Providing targeted information to these diverse populations is challenging.
A significant amount of denial about HIV risk continues to exist in these communities. As with other groups, there may also be fear and stigmatization of those who have HIV. Prevention messages must be tailored and presented in a culturally and linguistically appropriate manner. The messages must be carried through channels that are appropriate for the individual community. These channels may include religious institutions or respected elders in the community. Ironically, it may be these institutions or elders who, in the past, have contributed to the misinformation and stigma associated with HIV.
Many HIV prevention programs are recognizing the importance of working with diverse communities. Input from these communities must be included in planning, delivering, and evaluating HIV prevention activities.
Children with HIV
The major cause of HIV in children under age 13 has been mother to child transmission during pregnancy, childbirth or breastfeeding. Testing for antibodies for newborns is ineffective as the maternal antibodies remain in the infant’s system for up to 18 months. Childhood deaths are related to opportunistic infections and up to 20% of children will acquire an opportunistic infection during their first year of life. Simple infections such as colds, fever, diarrhea, dehydration, fungal infections from diaper rash can develop into more severe infections and longer hospital stays.