Living with the uncertainty of HIV/AIDS

Medical uncertainties include uncertainties about diagnosis, symptom patterns, treatments and care, and disease progression and prognosis (ie, the probable future course and outcome of a person's disease) (Brashers et al, 2003).

CD4+ counts rise and fall; so much so that people diagnosed with AIDS in the past, based on their low CD4+ counts, can recover and have CD4+ counts that do not meet the CDC's diagnostic criteria for AIDS. This can be confusing for people with HIV, both psychologically ("Do I still have AIDS?") and financially ("Do I still qualify for disability benefits?"). In addition, the various numbers used to monitor the health of people with HIV, including CD4+ counts and viral load, can be difficult to interpret.

All people get aches and pains. People with HIV face the uncertainty of not knowing whether these aches and pains mean that their illness is worsening. In addition, people with HIV have many different symptoms that change often, making it difficult for them to plan for the future. People with HIV are also likely to get opportunistic infections that take advantage of their weakened immune systems. However, they do not know which of the many infections they will eventually get, and often worry about the symptoms and consequences of the different infections.

Antiretroviral therapy usually requires taking three or more drugs at different times of the day according to different rules (for example, take with food vs. take on an empty stomach). These therapies also often change, so people with HIV may worry about taking their drugs correctly. In addition, many medical treatments are experimental, and so people using them do not know their safety or effectiveness. People's bodies also vary in their responses to different therapies. It is therefore impossible to predict whether different therapies will work or what their side effects will be.

For people with HIV, it is difficult to know which preventative measures to take against opportunistic infections and when to take them. However, they must always be vigilant about food and water safety and about being exposed to other viruses.

Some HIV+ people's health quickly declines, whereas other HIV+ people's health stays stable for many years. New drugs sometimes return seriously ill people to good health, so that they have to return to planning for the future, rather than preparing for their own death.

Personal uncertainties include uncertainties about one's personal identity, as well as about one's financial challenges and future (Brashers et al, 2003). During the asymptomatic stage of HIV disease, people feel well but know that they are HIV-infected. This can cause them to feel tension between their roles as a sick person versus a healthy person. In addition, people with HIV are often married to, friends with, or related to other people with HIV, so that they often become caregivers. At the same time, these people also need care. This can cause tension between caregiver versus care-receiver roles.

Financial uncertainties are also a significant challenge for people with HIV. Many face uncertainties about when to claim disability status. On the one hand, claiming disability means that insurance companies or social security organizations will help pay for treatment. On the other hand, however, claiming disability limits employment options. Additionally, HIV treatments are expensive. People with HIV often feel that they are trading their own and their family's financial well being for their health. Finally, because of the wide variability in the course of HIV, people with HIV have difficulty knowing how much money to budget for their treatment and for how long.

Social uncertainties include uncertainty about how other people will react to the news that one has HIV, how old relationships will change, and how new relationships will develop (Brashers et al, 2003). In particular, HIV/AIDS is a stigmatized illness because it has been associated with homosexuality, drug use, and promiscuity. When people let others know that they have HIV, they often do not know whether they will be accepted or rejected. In addition, people with HIV face the prospect of social isolation, since families and loved ones may not react well to their illness. People with HIV also face much uncertainty in dating and long-term relationships, especially because they run the risk of infecting others.