Everyone who is HIV-positive -- those who were diagnosed last week, those who have been on antiretroviral therapy for a decade, and all those in between -- should take steps to lower their stress levels. This can be done. Your primary care providers can help you cope with the stress of living with HIV -- but only if you recognize that you are under stress and ask for help in managing it. Several groups have developed programs designed to change behavior, enhance immunity, moderate symptoms, and increase longevity in people living with HIV (see box, below). And, finally, the AIDS service organizations in your area offer special programs that will help you cope with the stress that is a fact of life for people living with HIV.
In the end, however, the task of reducing the stresses in your life is up to you. To help you achieve this all-important goal, we have provided some very specific suggestions for ways you can alleviate certain specific sources of stress that are common to all people living with HIV.
Center for the Biopsychosocial Study of AIDS
The L.I.F.E. Program®
The Mind-Body-Spirit Program for HIV/AIDS
1. Preoccupation with death and dying. Henry Ford liked to say: "If you think you can, or you think you can't, you're right." Ford's brand of positive thinking can be applied to living with HIV. As we all know, the only inevitable things in life are death and taxes -- and there's not much to be gained by dwelling on either. In fact, there's something to be lost if you develop a morbid fixation on death and dying: CD4 cells. You need to focus on short-term, achievable, realistic goals. You need to take pleasure in what is at hand: good food, good weather, a cat that comes when you call, a family member or friend who comes to call. Talk to long-term survivors; they have secrets to share. And talk to other people living with HIV, the ones who seem to be the most cheerful, the most buoyant, the most optimistic. Find out how they do it, and steal their best ideas.
2. Chronic impatience. You know that old saw: "The hurrier I go, the behinder I get." Well, it applies to tense, driven, workaholic, Type A personalities -- stressed-out, always late, ill-organized, insomniac. The hurrier they go, the behinder they get on CD4 cells. All people living with HIV, the Type Bs every bit as much as the Type As, need to force themselves to slow down. This requires some effort at first, but it eventually becomes a daily habit, like flossing after meals. Some people derive real benefit from structured forms of meditation; others prefer more informal forms of stress-reduction and relaxation: a long bath, a short nap, a midmorning tea-and-cookie break, a midafternoon stroll around the block.
3. Sustained survival stress. Living with HIV means living with stress. There is the stress of remembering to take all of your medications every day. There is the stress of monitoring your health status on a daily basis and your response to therapy on a month-to-month basis. For some, there is the added stress of having to conceal the fact that they are living with AIDS. And for all people with HIV, there is the unending, unabating stress of not knowing. Not knowing if your cough is actually PCP. Not knowing if your anti-HIV drugs are actually working. Not knowing what is coming next, and what form it will take, and how bad it will be, and how long it will last.
Stress that endures for months on end, as stress so often does for people living with HIV, can consume CD4 cells. To combat high stress -- and conserve your immune system -- you need to learn to reduce the chief sources of stress in your life. And to do that you need a specific plan. Carefully consider the 19 stress factors listed in this Pull Out and Save section. Determine which factors most affect you, and gauge whether your performance in each of those specific areas is in some way lacking or inadequate. Make a list of the areas in which you are weakest and the ways in which your performance might be improved. (Feel free to adopt -- and adapt -- any of the specific suggestions for stress-reduction that are offered in this section.) Merely formulating such a plan will help you to reduce the level of stress in your life, because doing so establishes that these stressors are manageable.
4. Protracted, unmanaged grieving. Grief is the natural emotion that one feels after the loss of someone, or something, important. Grief can result from the loss of a parent, family member, lover, or friend. Death is the most obvious and most traumatic loss, but divorce and the break-up of a relationship are also forms of loss. Grieving can be intense for losses other than people: for loss of a job and the special status it brought; for loss of a natural ability (e.g., the loss of one's sight); for loss of a major life convenience (e.g., driving one's own car); for loss of financial security; even for the loss of a beloved pet.
After a significant loss, grieving is natural. It is also psychologically necessary: it rebalances us emotionally and allows us to return to normal life. It is completely normal to be plunged into grief after a significant loss, to experience that grief and its life-disrupting effects for many months, and then to put the grief aside. If you find you are still experiencing unresolved grief half a year after a loss, you should seek the help of a professional counselor.
It is often helpful to plan a "leave-taking" ritual to mark the end of a period of intense grieving. Hold this informal ceremony on a specific day at a specific time, conduct it at a meaningful location, and invite friends and family to attend. This event, a kind of second funeral, acknowledges your loss in a meaningful, tangible way, and it brings the period of mourning to a close.
5. Depression. Depression often goes undiagnosed and untreated in people with HIV, in part because many of the classic symptoms of depression -- fatigue, sleep disturbances, decreased libido, impaired concentration -- are also common to symptomatic HIV disease itself. As a result, these symptoms are often incorrectly attributed to advancing disease rather than to depression. Many caregivers incorrectly assume that demoralization, a profound sense of hopelessness, and loss of direction, purpose, and self-esteem -- all symptoms of depression -- are "normal" emotional responses to the harsh realities of living with HIV and therefore require no treatment. Given this pervasive belief, it cannot be stressed too often or too emphatically that chronic depression is never normal.
Drug therapy is now standard treatment for clinical depression, and the advent of newer, safer, better-tolerated antidepressants has given providers many options for treating depression. Antidepressants help, but they do not solve the problem. If you feel depressed, seek the help of a trained counselor.
6. Absence of purpose and goals. One common trait of long-term survivors is their participation in some sort of personally meaningful, goal-directed activity. All people need specific goals in life, and every one of us needs a sense of purpose. Many people with HIV abandon their life goals after they find out they are HIV-positive. If you did, then it is time to set yourself some realistic, concrete, attainable, short-term goals. (Many long-term survivors cite volunteer work as a source of purpose and pride in their lives.) And, thanks to HAART, it is also time to revive some of your cherished long-term goals -- which may not be as far-fetched as they seemed before the advent of maximally suppressive antiretroviral therapy.
7. Lack of self-assertiveness. Self-assertiveness is a common characteristic of long-term survivors, and this trait can be learned by unassertive individuals who are willing to work with trained counselors. The meek are not going to inherit the Earth anytime soon, and all people with HIV need to learn to be aggressive about husbanding their health, about seeking out support, and about deflecting stress. You are entitled to certain services, a certain standard of care, and a certain solicitude from those you encounter. Ask for them. Expect them. Insist on them. Be the squeaky wheel that gets the grease.
8. Lack of trusted support. The presence of a spouse, life-partner, confidant or trusted friend in the life of a person with HIV appears to provide a buffer against the negative effects of stress, grief, and depression on the psyche and the immune system. The old rule that "the lonely die sooner" is particularly applicable to people with HIV. For this reason any HIV-positive individual who is emotionally isolated, by choice or circumstance, is a person at risk. People who have lost loved ones to AIDS -- particularly those who have suffered serial losses -- may be especially reluctant to form new attachments, but all people with HIV need someone they can depend on in times of crisis. If you do not have sources of trusted support, ask your primary care providers to help you establish such contacts -- with a religious or spiritual advisor, with a family member or friend, with a mental-health counselor or with a "buddy" from the local AIDS service organization.
9. Poor coping ability in times of crisis. Some people seem less fazed by HIV disease than others. If you have trouble coping with HIV, especially during the bad times, seek help. And don't wait until you are in the midst of a crisis to look for assistance -- plan ahead. The best people to help you though difficult times are trained counselors. The next best are those who have weathered such situations themselves -- other people with HIV. Ask them how they manage. Ask them what specific strategies they use to get themselves through the bad times. Ask them what AIDS service organizations have been the biggest help to them. Ask if you can call them in an emergency.
10. Inadequate breathing patterns. Many individuals, when under severe or sustained stress, unconsciously hold their breath or take shallow breaths -- practices that produce fatigue and lassitude in the short term and can have more serious effects if sustained. If you find that you have trouble breathing, especially during stressful periods, it may be helpful to do some simple deep-breathing exercises when you get up in the morning and before you go to bed at night. Yoga, aerobic, and exercise classes that focus on breathing can also be helpful. Finally, you may also find it useful to post reminder stickers on the telephones you use and the mirrors you consult, at your desk and on the refrigerator door. The posted message is a simple one: "Relax. Close your eyes. Breathe deeply. Good! Now repeat."
11. Insufficient fluid intake. It is more common to encounter an individual who is underhydrated than one who is adequately hydrated. The rule of thumb for fluid intake is eight eight-ounce glasses per day, and intake should be increased during periods of heat or exercise, or when an individual is vomiting or has diarrhea. Few people with HIV consistently drink eight eight-ounce glasses of fluid a day. In a small number of individuals taking Crixivan®, not drinking enough can lead to the formation of kidney stones. In all others it can slow the excretion of wastes, overburden the kidneys, and impose physical stresses on the body.
Because the C.D.C. and the Public Health Service have linked the drinking of municipal tap water to both biological and chemical contaminants, people with CD4 counts below 50 should consider drinking boiled or bottled water (see "Is It Safe to Drink the Water?" in Vol. 1, No. 1 of AIDS Care).
12. Poor appetite, eating habits, and nutrition. In advanced HIV disease, diminished appetite and absorption are common, and so-called AIDS-related wasting can lead to early death. Appetite disturbances can occur in anyone who is taking antiretroviral agents, particularly during the introductory phase of combination therapy. Indeed, GI disturbances and diarrhea are to be anticipated with some drugs and drug combinations. Nausea, gastric upset, and diarrhea can be controlled with medications, and appetite can be stimulated with steroids and other drugs. If you are concerned about your diet, you may find it useful to consult a nutritionist, who will be able to offer specific, easy-to-follow suggestions for ways you can increase your caloric intake, achieve a better balanced diet, or address identified nutritional insufficiencies.
13. Sleep disturbances. Recent research has demonstrated that even one night of extreme sleep disturbance can cause substantial derangement of immune function. As a rule, a night or two of undisturbed sleep will return these functions to normal. People with HIV who experience episodic but severe sleep disturbances or who develop insomnia need to ask their caregivers for help. Prescription sedatives do not impede immune function, so these drugs are a useful means of ensuring that people with HIV are well rested. Individuals who cannot get to sleep without sedatives, or who awake from sedated sleep, may benefit from counseling that has as its primary objective identifying and reducing the sources of the individual's insomnia.
14. Substance abuse. The term "substance abuse" should be given its broadest possible definition here, the better to identify all potential sources of physiological and psychological stress in the lives of people with HIV. Here the list of substances that may be abused is not limited to IV drugs, alcohol, amphetamines, and marijuana; it also includes caffeine, nicotine, and simple sugar. People who consume excessive amounts of one or more of these substances impose stresses on their bodies, and they need to know that these excesses can be harmful to the immune system.
If you think you can manage it, abstain from taking these harmful substances. If you think you can't, adopt a "harm reduction" plan, reducing either the quantity or frequency of your intake of these substances. In most large cities a wide variety of agencies, groups, clinics, and other providers offer substance-abuse treatment programs that can help you achieve these goals (see "Reach Out and Touch Someone," the Pull Out and Save feature in the August 1997 issue of AIDS Care).
15. Inadequate or inappropriate exercise. Mild to moderate exercise on a regular basis is another characteristic of long-term survivors -- and such regular exercise is all the more important for people with HIV because it seems to boost the immune system. All HIV-positive patients should know this. They should also know that even moderate exercise -- a walk of 20 minutes' duration three times a week, for example -- will reduce psychological stress and improve immune function. If you do not think you are getting sufficient exercise on your own, join one of the many social groups, clubs, and events that promote physical activity.
16. Repeated exposure to HIV and other infections. Many HIV-positive individuals do not believe that they need to practice safe sex, because they are already infected. They fail to appreciate that repeated exposure to HIV can have extremely deleterious effects on their immune system. Unsafe behavior can expose you to more virulent strains of the virus and to viral isolates that are resistant to drugs you are taking. It can also expose you to other sexually-transmitted diseases -- some of them, like hepatitis C, potentially lethal. (You may find it useful to reread "Risky Business," a frank discussion of the risks inherent in a wide range of sexual practices, and "How to Use a Condom Correctly." Both appeared in the April 1997 issue of AIDS Care.)
People with HIV also need to understand how to avoid unnecessary contact with germs, and how to avoid contagion. They need to know how to prepare and store food in ways which ensure that they will not pick up germs from unwashed produce, uncooked poultry, or raw eggs -- or deposit germs on foodstuffs they are preparing. They also need to develop good hygiene habits (like washing their hands before and after eating, or after contact with public toilets). Basic health- education classes can be very helpful in this regard.
17. Limited capacity for self-care when sick. All people with HIV need to know how to take care of themselves when they are sick. This information ranges from the most basic (how to ensure that you are adequately hydrated) to the most sophisticated (how to give yourself a sterile infusion). All adults with HIV need to develop a plan for self-care, one that helps them appreciate what they can -- and cannot -- do for themselves during periods of illness. This plan should include ensuring that supplies of medicines, sterile dressings, easy-to-prepare foods, and other provisions are adequate to see you through a week or more of confinement. It should also list the names and the daytime and evening phone numbers of people who can be counted on to provide help during an illness (by picking up a prescription at the pharmacy, heating a meal, feeding and exercising a pet, or providing a needed massage). Finally, it should encompass some comforting rituals that promote serenity and encourage healing (such as wrapping yourself in a blanket on the sofa, with a pot of tea and a selection of recent magazines at hand and the TV remote nearby).
18. Limited involvement in/understanding of HIV-related health issues. The people with HIV who do well are the ones who are active participants in their own healthcare. They take the time that is needed to understand how their medications work and why compliance is important. They often elect to investigate a range of alternative or complementary therapies. In addition, they learn to discuss their health status on a regular basis with one or more trusted confidants outside the healthcare profession.
Because you must be an active participant in your own healthcare if you want to achieve the maximum benefits of current therapies, you should make every effort to educate yourself about the fundamentals of HIV infection and its treatment. A good place to begin is with the Pull Out and Save feature that appeared in the February 1997 issue of AIDS Care, "Why Combination Therapy?" That laminated, full-color insert uses a simple schematic diagram to explain the mechanism of action of each class of antiretroviral agents, and it shows the role each plays in preventing viral replication. A logical follow-up to "Why Combination Therapy?" is "Mastering Combination Therapy," the Pull Out and Save feature that was bound into the April 1997 issue of AIDS Care. That color insert shows you how to integrate pill-taking into your daily routine in ways that promote compliance with multidrug antiretroviral regimens.
19. Passive, uninformed relationship with primary care providers. By and large, the people with HIV who do well are the ones who work cooperatively and actively to establish and maintain good relationships with their primary care providers. They develop a capacity for trust and candor in their dealings with those care providers, and they develop a capacity to detect small changes in their health status -- so that they can alert their care providers to problems while those matters are minor and more easily managed. These individuals use their appointments efficiently, often arriving at each session with a written list of symptoms, questions, and comments.
You need to see yourself as a partner in your own healthcare. Think of the task of overseeing your health as a job, one that has good prospects for advancement if you work at it with diligence and dedication. Think of your primary care providers as coworkers, colleagues, officemates. (Okay, think of your doctor as your immediate boss, if you like.) When you visit your care providers in their offices, you've got the same right to be heard that you have on the job. If you have concerns, voice them. If you have complaints, list them. The more active your involvement in your own healthcare, the better your prospects.
Jeffrey M. Leiphart, Ph.D., is Director of HIV Prevention Services at UCSF AIDS Health Project, San Francisco, CA