Introduction to AIDS
Early on in the epidemic, the general public’s impression of AIDS became firmly entrenched as a very lethal acute sickness with a sharp downward trend. Nevertheless, some researchers began talking about HIV/AIDS as a chronic illness as early as 1991 in the nursing and medical sociology literature. Shortly after, other psychological studies of small groups of long-term AIDS survivors were published; nonetheless, these instances were still viewed as rare exceptions.
The idea that AIDS is a chronic illness was not widely acknowledged until the introduction of protease inhibitors in 1996, which launched the era of highly active antiretroviral therapy (HAART). Because they decreased the risk of opportunistic infections and prolonged survival by suppressing viral replication and raising CD4 cell numbers, these drugs were hailed as “miraculous” in the media. According to p. 161 of the article, its accessibility “reinserted the term ‘hope’ into the discussion about AIDS for the first time in a decade of therapy trials” and gave infected people the chance for a “second life”.
While the disease trajectory and consequently life expectancy of many infected people have significantly changed in the United States as a result of recent treatment advancements, AIDS-related mortality continues to rise unabatedly in regions of the world where access to new therapies is restricted. AIDS has reached catastrophic levels in many developing nations due to the unreasonably high costs of antiretrovirals as well as weak and ineffective health delivery systems.
However, not all infected people have access to or opt to use the new medicines, even in the United States. Although the evidence supporting their actions is still equivocal, some doctors are less likely to recommend HAART to patients they believe to be at risk for poor adherence, such as those with a history of drug use, the homeless, and the mentally ill.
Chronic illness and AIDS
The objectives of medical care are typically containment, slowing disease progression, and symptom management rather than cure because chronic illnesses are typically incurable. Beyond this, chronic illnesses frequently have several similar traits. They frequently have an unpredictable course or illness trajectory that is frequently defined by alternating intervals of remission and recurrence, or stable periods broken up by sporadic symptom exacerbations. Most require adherence to a treatment plan, however, these vary greatly in complexity and effectiveness among conditions.
\Since most daily management of the illness occurs outside of established medical institutions or facilities, the chronic disease also frequently necessitates significant self-care (including self-monitoring of symptoms) on the part of the patient. Chronic illnesses are stigmatized to some extent as well because they are deviant behavior and as such are in an undesirable state. However, this varies considerably between diseases and is based on many variables, including whether the patient is thought to be at fault for contracting the sickness, whether it is communicable, and whether there is visible disfigurement.
Changes in relationships and positions are also frequent
At least during the most severe stages of an illness, reliance is almost always necessary. Given the patient’s limits or disabilities, roles, and duties in relationships and families frequently need to be renegotiated. Finally, when the patient works to permanently incorporate the illness into his or her life and self-perception, chronic diseases frequently result in identity alterations. Due to the unpredictability that many of these sickness characteristics entail, life with chronic disorders sometimes comes with psychological discomfort.
Emotional distress in AIDS
The negative psychological effects of knowing one is sick have been well-documented from the beginning of the AIDS epidemic. The research was largely centered on evaluating depression (depressive symptomatology or clinical depression) and suicidal thinking or acts when AIDS was thought of as a very deadly disease with an inescapable downward trajectory. Even though studies results occasionally varied, the overwhelming body of evidence from the pre-HAART era revealed that depression was common and that the likelihood of suicidal thinking and action was increased. When HIV-related symptoms first surfaced, in the later stages of the illness, and after experiencing repeated AIDS-related losses in their social network, infected persons appeared to be more emotionally susceptible.
It is a commonly believed, though largely untested, belief that the prospects for a longer lifespan and improved quality of life provided by the new therapies make living with HIV substantially less unpleasant than it was in the past.
When CD4 cell count, HIV symptoms, physical constraints, and social support were taken into account as co-variates, the sample as a whole exhibited a statistically significant, though clinically mild, drop over time on all of the psychological distress measures used. However, they found no discernible differences in the drop in hopelessness or the increase in quality of life when they further examined participants whose status on medical markers had improved and had not improved.
HIV/AIDS patients have always had to deal with uncertainty. This ambiguity at the beginning of the epidemic included things like when someone had been infected, where they were in the illness trajectory, how long they were likely to live, and whether or not there would be any effective medicines produced to stop or reduce the progression of their sickness. With the introduction of zidovudine and other medications from the pre-HAART era, doubt concentrated on questions like whether to get tested, when to start therapy, and whether someone would respond well to treatment.
With HAART now available, some uncertainties have changed while others have remained the same. For instance, several diseased people who have longer survival as a result of improved treatment regimens would have to deal with newly emerging opportunistic illnesses that, in the past, patients did not survive long enough to experience. Additionally, the long-term safety of these drugs is unknown due to their recent development. Additionally, it is unclear how effective a recovered immune system will be.
Roles and relationships
Better health has made it possible for those who are infected to consider taking on new social roles or realistically resuming previous ones (e.g., parent, worker, partner). For instance, the discovery in 1994 that zidovudine treatment could considerably limit virus transmission from a mother to her newborn permitted infected women to consider pregnancy with more ease. Since HAART was developed, more people may now consider having children because the danger of mother-to-child transmission has significantly decreased.
Prior concerns about not being physically able to or living long enough to raise a kid may also be allayed as a result of increased survival and improved health brought on by HAART However, HIV-infected women assessing the advantages and disadvantages of parenthood in the era of HAART continue to be highly concerned about the possible harmful impact of parental stressors on their health.
Identity work is frequently necessary if a chronic illness is diagnosed . How each infected person incorporates their condition into their life varies. Those who planned their lives around their disease are at one extreme. These persons frequently limit their social networks to other sick people, participate in political or social campaigning on behalf of infected people, and work for or volunteer for AIDS groups. On the opposite end of the spectrum are those who have made an effort to downplay and normalize their sickness while trying to keep as much of their pre-illness lives as they can intact. They try to keep the illness from taking up all of their attention.
Many HIV/AIDS patients can now view themselves as having a chronic illness rather than as someone who is terminally ill thanks to the HARRT initiative. Additionally, new medicines have made it possible for patients to feel better and keep up with their regular routines for longer periods, which has helped to normalize and compartmentalize the illness and reduce the salient of the patient identity. Patients may feel better, but their drug schedules serve as a continual reminder that they are still patients even though they may feel better.
People who have been infected have been feared and vilified by others since the beginning of the pandemic. They have experienced prejudice and social exclusion. Since the beginning of the pandemic, physicians’ and nurses’ resistance to providing care for HIV-positive patients has been well documented.
Trends in HIV-related stigma in the United States between 1991 and 1999 show some advances but also some enduring issues. The prevalence of overt stigma, including backing for coercive measures like forced testing and quarantine, had greatly decreased. Even still, nearly half (48%) of the respondents in 1999 believed that people with AIDS were to blame for the disease. Significant numbers also said they would feel “very or very uncomfortable” if their child attended school with an AIDS-positive child (30%), had an AIDS-positive office coworker (22%), or went to a local grocery store whose owner had the disease (29%).
The experience of living with HIV/AIDS over the past 20 years has seen both many continuities and discontinuities, as this review reveals. The advances that have been made in the diagnosis, treatment, and clinical management of this disease since the outbreak of the pandemic are cause for celebration.
But patients are still dealing with many of the same psychosocial problems from before HAART, albeit in different forms.
We should continue to appreciate and build upon what we have learned about people’s daily struggles to manage with the illness even though AIDS has been reclassified as a chronic condition because many of the same challenges are still relevant as the epidemic spreads.