Chapter 4
Living with AIDS

In the spring of 1996 schoolteacher Beth Bye was extremely ill with the incurable sexually transmitted disease AIDS. Infected with the human immunodeficiency virus (HIV), which destroys the immune system, Beth's body was no longer able to fight off infections. She had suffered from a multitude of illnesses, most of which had been treated only to appear again, and she was now losing her vision and mental capacity. Beth was constantly tired and could no longer work or even take her dog for walks. On the advice of her doctor, Beth had already made arrangements for her own funeral and was considering entering a hospice in which to live out her few remaining days.

It was at this stage that Beth was given a newly developed therapy for AIDS. The effects were astounding. Within two months, the devastation that HIV had caused to her immune system had been significantly reversed. Beth was now able to take two-mile walks with her dog and even return to her thirty-hour-a-week teaching job. Beth says, "My recovery was like being on death row and getting that last minute pardon from the governor."²⁴ Though recovery from an extremely advanced stage of AIDS is not guaranteed, thanks to a better understanding of the disease and the advent of new treatments, AIDS patients are spending less time in hospitals and more time leading productive, rewarding, more normal lives.

A Complex Disease

New treatments for AIDS have taken a long time to develop, in part because AIDS is an extremely complex disease. Characterized by a failure of the body to fight off infection, AIDS typically presents as a series of diseases, or syndrome, that is eventually fatal. HIV, the cause of AIDS, is spread through the exchange of bodily fluids or blood, occurring most frequently through sexual contact and the use of injectable drugs. Like other viruses, HIV requires a host cell to reproduce, but is unusual because it prefers cells of the human immune system, known as T-helper cells. Infection by HIV results in the death of these cells and the collapse of the immune system.

Destruction of the immune system takes time, and a diagnosis of AIDS might not be made for many years after infection by HIV. In the interim, symptoms vary widely from person to person with the only common sign being frequent and persistent illness. Eventually HIV reduces the number of T-helper cells below a critical level, disarming the immune system and leading to full-blown AIDS. At this point the body can no longer defend itself against the microbes that are a part of the natural environment and a continual string of opportunistic infections occur leading to death.

The randomness and repetition of opportunistic infections suffered by AIDS patients and the rapid deterioration in appearance, mental capacity, and basic motor skills are some of the aspects that AIDS patients and those around them find most difficult to cope with. Young, previously healthy people who would otherwise look forward to a long and active life may succumb to rare lung infections or cancers, suffer significant weight loss, or become permanently disabled from attacks to their nervous system.

Early detection of HIV is important because treatments that delay the downward spiral to AIDS are far more effective if they are started at an early stage of infection rather than at a point when the immune system is severely damaged. Diagnosis of HIV requires only a simple blood test that can be performed as early as six to twelve weeks after infection, yet many people are not diagnosed until much later. Some are unaware that they are infected with HIV and are only diagnosed when they fall ill. Others may suspect that they are infected, but find it difficult to confront this deadly disease by being tested. Tim, who was urged to be tested for HIV by his partner in 1985, remembers telling him, "I'm already fairly sure I am HIV positive.… I don't really need to carry around this burden of actually knowing. If I've got it, I've got it and I'm going to be dead in a couple of years anyway."²⁵

Life-Altering HIV Diagnosis

Being diagnosed with HIV has a profound impact on most people's lives. It alters their self-image and the way others view them, resulting in a reassessment of personal goals and dramatic changes in relationships with friends and family. The imminent threat of death posed by a positive diagnosis is the impetus behind these changes. According to David, who is currently being treated for AIDS, "Fear of death is a difficult emotion for most of us to deal with but when the prospect is placed dramatically in front of you as with an AIDS diagnosis, it can lead to all sorts of desperate thinking."²⁶ Some become obsessed with finding a cure for their disease. Others react recklessly, taking illegal drugs, binge drinking, or frivolously spending their life's savings. Depression and loss of self-esteem are also common. Darlene, a forty-nine-year-old heterosexual grandmother, who discovered that she was HIV positive eight and a half years ago, had a typical response: "After [finding out about my] infection, I felt very much like damaged goods and worthless."²⁷

The feelings of worthlessness experienced by people with HIV are often reinforced by the prejudices and biases of others. Although HIV can be spread by many different routes, those who are infected may be shunned by people who assume that their disease was contracted through homosexual activity or the use of illicit drugs, or who mistakenly fear contracting HIV from casual contact with the infected person. Though it is well known that HIV cannot be spread by casual contact, such as shaking hands or sharing food, many people are poorly informed or skeptical of this information. Steve, a social worker at an AIDS treatment center in New York, says, "People here still talk about going to visit families and having someone put a newspaper down on the couch for them to sit on, or wash their dishes with bleach after dinner."²⁸

Positive results from an HIV test can sour a sexual relationship, regardless of whether the infection was acquired from that particular partner. Monica, who found out about her HIV infection in 1995, says, "The man I was seeing dropped me like a hot potato when he found out."²⁹ In contrast to worries about casual contact, the concerns of sexual partners are justified. Sexual intercourse is one of the most common ways that HIV is transmitted and even the use of condoms does not give 100 percent protection. Some people may continue to have sexual relations with an HIV-positive partner, but many others will consider the risk too great and will end the relationship.

Negative attitudes may also surface in the workplace despite the introduction of laws to prevent discrimination against people with HIV. One of the most difficult situations that Tim encountered was at work. Tim says, "The area manager went out of his way to make life as uncomfortable for me as he could, including taking me aside for a quiet coffee and telling me I should get out of the job. If I'd only had a witness! But he was very clever and never said anything when anyone else was around."³⁰ Actions such as these are illegal in most places, but other laws permit discriminatory action against those with HIV. In April 1997 a law was passed granting the U.S. Immigration and Naturalization Services (INS) the right to arrest and remove any noncitizen who is HIV positive and who has entered the country without INS permission. Other countries have similar policies and require proof of HIV-negative status before granting residency or citizenship.

Taking Control of HIV

Living with HIV requires infected people to both manage the upheaval brought on by diagnosis and seek treatment for their disease, with one goal: keeping the immune system functioning as well as possible for as long as possible. Management of HIV is complex because both physical and emotional health must be taken into account. Staying physically healthy requires constant medical attention, while stable emotional health hinges on keeping stress and disruptive change to a minimum. Finding a balance between the two can be tricky. David, who is HIV positive, says:

I have taken the view that I will try to live my life in as normal a way as possible compared to life before HIV. To try and develop a moderate middle-of-the-road approach to a potentially alarming dilemma without getting too carried away. Sometimes with a multitude of opportunistic infections it has been difficult to do. After each new infection I have tried to incorporate the new extra pills with a minimum of fuss and depression.… Self-pity and the melodrama of AIDS are the enemies to be avoided where possible. Of course it doesn't always work. Attend a couple of funerals in a month and you realize you're in a pretty bizarre, almost surreal situation. The bone seems pointed squarely in your direction as the coffin is carried down the aisle.³¹

Good medical care is essential for survival and ideally should begin in the earliest, asymptomatic period of HIV infection. Early care is focused on eliminating the threat of opportunistic infections before the immune system is destroyed. Vaccination against diseases such as hepatitis B and detection and treatment of undiagnosed diseases prevents them from becoming deadly threats later on. A close watch is also kept on the condition of the immune system. Frequent testing is performed to determine the number of T-helper cells per milliliter of blood. This provides a measure of how far the disease has progressed and helps forecast when treatment should begin in order to prevent opportunistic infections from getting the upper hand. Because treatment of HIV is complex and requires constant and long-term medical attention, many AIDS patients find selecting a doctor and medical team with suitable expertise and with whom they are comfortable makes a big difference in their ability to follow treatment regimens.

Yet finding a good doctor does not necessarily mean that the infected person can sit back and relax. Recent studies show that people who live the longest are those who take an active interest in learning how to treat HIV from a variety of sources rather than leaving all of the decisions up to their doctor.

Miraculous New Drugs for HIV Are Only a Partial Solution

Drug treatments for HIV have dramatically improved with the introduction in 1996 of a combination drug therapy called highly active antiretroviral therapy (HAART). Prior to this time most people with HIV died within a few years of contracting the virus. However, since the advent of HAART it is now common for infected people to live relatively active lives for ten years or more. Because of this new therapy, AIDS-related deaths in the United States plummeted from fifty thousand in 1995 to well under twenty thousand in the year 2000. HAART works by decreasing the number of viral particles inside the body, thereby restoring immune function. According to Richard Klein, of the Food and Drug Administration, "It returns many who were dead and dying to a relatively healthy and productive life."³² The impact that HAART can have on a person's health is so dramatic that it is often referred to as the "Lazarus effect" in reference to the biblical figure who was raised from the dead.

The new drugs for HIV may be successful at improving the health and increasing the longevity of those infected with HIV, but they are not for everyone and they involve significant difficulties. One problem is that they are expensive. Treatment of a single person with HAART costs between seven and twenty thousand dollars per year. While insurance companies may pay part or all of the bill for their clients, people who do not have insurance can find access to treatment difficult.

Demanding dosing schedules and side effects are also problematic. A minimum of three types of medication are involved in HAART therapy. These must be taken several times a day and at specific times in relation to meals and other medications. Forgetting to take the medications or taking them at the wrong times can have disastrous consequences, allowing viral numbers to rebound and encouraging the evolution of drug-resistant strains. Because of these dangers, some doctors encourage their patients do a practice run using jelly beans or mints to see if they can stick to the schedule. Even when medications are taken correctly, serious side effects are common and may even force discontinuing the treatment. The least serious side effects include chronic diarrhea and an unsightly redistribution of fat from the face and limbs to the stomach, breasts, and neck. HAART can also induce diabetes, strokes, and heart attacks, as well as increase the likelihood of bleeding in hemophiliacs.

However, the most disappointing aspect of HAART is that it is ultimately unable to cure HIV. While HAART is successful in reducing HIV to undetectable levels in the blood of patients, it is only a temporary reprieve from the disease because the virus remains untouched in areas such as the brain, retina, and testes and inevitably becomes resistant to the drugs. At this point, therapy becomes ineffective, viral numbers increase, and the progression to AIDS is resumed.

The difficulties brought on by the treatment of HIV make many question whether the advantages in prolonging life are worth the trouble. When Tim first began HAART in 1997, he was taking 357 tablets a week. Some of these were to control the side effects from the drugs themselves, including chronic diarrhea. Doctors would enthusiastically announce Tim's rising T-helper cell counts and decreasing viral loads, but Tim found the regimen almost too difficult to bear, commenting:

I'm getting all of these benefits from it but.… are the benefits really worth the quality of life that I'm being deprived of? Three hundred odd drugs for 12 months or for 2 years or for 10 years? Of course if you're going to take that many drugs over a long period of time, you really need a hell of a lot of motivation and good health isn't a good enough motivation on its own to take a huge amount of drugs, particularly when you're getting side effects from them.³³

Indeed, toxic side effects and inability to tolerate the HAART regimen lead many patients to discontinue it or switch to a different "drug cocktail" in as little as four months. Some people would rather face the consequences of HIV than those of HAART and most long for a less grueling treatment option.

Alternative Therapies and Healthy Living

In an effort to lessen the side effects, increase toleration of HAART, and improve their general sense of strength and well-being, many people living with HIV have turned to alternative therapies. Massage, acupuncture, herbal remedies, and homeopathy are some of the treatments that have been documented as offering relief from medication side effects and AIDS-related symptoms. In addition, there is evidence that people who receive these types of therapy feel healthier for taking an active role in their own medical treatment.

Healthy living can also strengthen the immune system. A balanced diet that includes the four food groups—protein, fruits and vegetables, breads and cereals, and dairy products—is important for people infected with HIV because it provides the body with energy to fight the virus. Most people with HIV need a minimum of thirty-five hundred calories per day and a protein intake that is one and a half to two times greater than is recommended for uninfected people. Some foods that are not recommended for the uninfected are actually good for people with HIV: Ice cream, pizza, tacos, and hamburgers, besides stimulating the appetite, can be valuable sources of protein and their high calorie and fat content helps counteract the weight loss associated with HIV infection.

The diet of people with HIV may need to be modified when certain illnesses arise. More calories may be required to combat a fever, and high fat or sugary foods may need to be temporarily abandoned to fight off some opportunistic infections. Diarrhea can undermine good nutrition by flushing valuable nutrients out of the body before they are absorbed. Special supplements with high fat, protein, and carbohydrate content may need to be taken if the condition continues.

Factors that stress the body also need to be eliminated so that the immune system is not further taxed and can devote all of its energies to fighting HIV. Getting a good night's sleep can be very helpful, as can moderate exercise. Smoking cigarettes and using recreational drugs is particularly damaging to HIV-positive individuals and is strongly discouraged.

Staying Emotionally Connected

When it comes to weathering the effects of HIV, taking care of emotional health is every bit as important as physical health. Coping with the psychological effects from HIV infection is no small feat. The initial shock of diagnosis is often followed by difficult treatment, unpredictable infections, and traumatic changes to a person's social life. Without support, the situation can easily become overwhelming and undermine any physical improvements gained from drug therapy. "I see [emotional] support as a vital HIV long-term survival skill," says Darlene, who is infected with HIV. "Without all of the support I have received, I sincerely believe I would not be here today."³⁴

Indeed, research shows a strong correlation between the longevity of people infected with HIV and their ability to establish a network of emotional support. It does not matter whether the network members are composed of partners, friends, family, or HIV support groups, as long as they are sympathetic and can maintain an emotional connection with the infected person. However, forming a support network is not always easy for people with HIV because it requires them to tell others about their infection. Sonja, who is infected with HIV, says, "Telling my family, in particular my parents, was one of the hardest things I have ever had to do. Not only did I have to tell them that I was HIV positive but also that I was an injecting drug user. Something that I had kept hidden for many years."³⁵

At a time when they are already emotionally fragile, people with HIV need to be selective about whom they tell. Sonja found it liberating to publish an article about her infection in a newspaper, but she cautions people to think carefully before disclosing their HIV-positive status. Sonja says:

Being clear within yourself about what sort of support you need and whom can best provide it will help you with disclosing. Ask yourself who needs to know and why they need to know.… Telling others can be life altering and sometimes painful so think carefully before you go exposing your soul to the world and be sure to have some sort of net in place to catch you if you should happen to topple unexpectedly. If you have a negative response from someone whom you thought would have responded differently don't let it dissuade you from seeking support from friends, support workers or counsellors.³⁶

Many people with HIV form their closest friendships with people who are also HIV positive. It is easier to relate to and empathize with people who have undergone the same major life experience. Meeting people who are HIV positive is not difficult. Numerous sites on the Internet promote communication between HIV-positive people. In addition, most medical institutions that offer treatment for HIV also organize HIV-positive support groups. Not only do these groups provide emotional support, but they help their members keep abreast of the latest treatments and may arrange assisted-living services when people become too ill to live independently.

Leading a Normal Life

As long as their health remains sound, there is no reason why people with HIV cannot exercise, work, attend school, and socialize just like everyone else. Striving to return to a normal life in spite of all of the demands of the disease may be one of the healthiest moves that a person with HIV makes. Readjusting to normal life does not necessarily happen overnight. It may take time to come to terms with the disease and have the energy and desire to pursue normal activities. Darlene remembers reaching the turning point:

When I was first diagnosed, I found nothing funny at all about HIV/AIDS.… I got aggravated when someone would try to joke about it. How dare they laugh at this terrible disease or about anything was my thoughts. However, that began to change when I attended my first AIDS retreat six months after I was diagnosed. I actually started seeing PWA's [people with AIDS] laughing and having fun in spite of being positive. I didn't understand how anyone could possibly be having fun and enjoying life when they had a disease that would some day kill them; but, I knew that I wanted to be able to laugh and enjoy life again just like they were. I heard that "laugher is like medicine to the soul" most of my life but at this retreat this phrase took on a new meaning. I needed to be able to take life with a grain of salt and enjoy it in spite of living with HIV.³⁷

Decisions about returning to work or school are basic to resuming life as a person with HIV. Keeping a job, for example, might be not only financially necessary but extremely gratifying as well: Work provides a distraction from the disease and the chance to interact with other people. There is no field of work that people with HIV are restricted from entering. Eight years after being diagnosed with HIV, Chris decided to return to her former profession as a caterer. Although it is illegal for employers to discriminate against HIV-positive job applicants or employees, Chris was nervous about how people would feel about her handling food if they found out about her infection. Her first day back at work was difficult, she says: "The butterflies were doing back flips when I first walked in, but subsided by the end of my shift. The work is only part-time, but it has boosted my self-esteem ten-fold.… I feel absolutely exhausted after I have finished work, but it is nice to be able to confidently say that it is because of work and not the effects of HIV."³⁸

Sexual relationships are part of normal life for most adults, whether they are infected with HIV or not. However, the dangers of transmission during sex means that the safety of sexual partners must be given serious consideration. Using condoms correctly and consistently is not good enough. Being responsible means making sure that potential partners are aware of the infection before becoming sexually involved. Although hearing this news will discourage many people from continuing the relationship, it is important that they are informed of the risk so that they can help with the careful use of condoms if they choose to proceed. One way to stop HIV from being an obstacle to intimate relationships is to choose partners who are also HIV positive, and support networks such as dating services that deal exclusively with HIV-positive clients are in place as sources of introduction and social interaction.

For some people living with HIV/AIDS, sexual activity and sexual desire wanes as a side effect of medication and illness, especially as the disease progresses. While drugs such as Viagra and injections of testosterone can be successful in boosting the sex drive, some HIV-positive people find emotional closeness may take precedence over physical satisfaction and prefer to adopt a celibate lifestyle.

"A Double-Edged Sword"

Living with HIV may seem like a relentless struggle to stay alive and healthy, but in the midst of coping with the difficult consequences of HIV, many people find a new appreciation for life. One person infected with HIV expresses this philosophy as measuring life by its depth, not its length. Being forced to confront mortality day in and day out can get people to focus on the things that are really important and make positive changes sooner rather than later. Tim is one person who sees a positive side to his infection. Reflecting on his current situation, Tim says:

I don't know how much longer I'm going to live. I could live another 30 years. I view HIV as a double-edged sword. I hate having HIV because it made me very ill [and] I've lost so many friends that I don't even talk about it because it's so heartbreaking. So I hate it for those reasons. But I love it because if it hadn't happened, I'd still be doing this job that I hate and I would just be living my life on that level. I wouldn't have gone through that huge transformation. That huge 'I don't want to do that anymore, I want to go off and do this.' And I would not have taken on board things that I want to do instead of what people thought I had to do or what my parents thought I should do. So 20 years on, its like I've been given a new life. It's very wonderful.³⁹