Many fears do not hold up in the cold light of reality.     If you fear sickness, find out which symptoms you should see your doctor about and which you should ignore. “I found out what’s what,” said Alan, “and now I don’t worry about every little cough.”     If you fear medications, tests, and procedures, educate yourself about them. Read what you can find, ask your doctor, ask people who have had the experience. Learn about drugs like AZT and their side effects. Talk to someone who’s had a bronchoscopy, who’s gone through a scanner, who’s had a lumbar puncture. The fear of such things is often much worse than the things themselves.     If you fear dying, talk to a therapist or pastor or other people in your situation or someone you love. Death, whether your own or that of someone you are caring for, seems like a dark thing we cannot talk about. Talking makes the unknown much less frightening. Talk as openly as you can.    If you fear rejection and desertion, find out if those you love will in fact stand by you. Try saying, “This is what will happen to me. Can you deal with that?” As it turns out, people are rarely completely abandoned by the people they love. “I know,” said Dean, “that given my resources in life, which are my relatives, I will always have a roof. That’s helped me with anxiety.” Steven said that he quit being afraid when his cousin said she’d come stay with him. Sometimes those people you love cannot offer unqualified support. In that case, you and they will need to negotiate what they feel able to give. People usually know and can be specific about what they can and cannot provide.     If you fear what the disease might do to you, ask your doctor, hospital mental health professional, or other people with HIV infection. During a stay in the hospital, Dean roomed with a man who was dying and, like June, Dean was full of fears for the future: “My roommate in the hospital was dying. I asked him lots of specific questions. I asked him, Could he care for himself? He told me that when he got too tired to follow a routine, he didn’t. I wondered, Was he lucid? I found out that things didn’t get bad for him until right before. He was religious—so am I—and that was reassuring to me. His lover was very attentive, and that was reassuring, too.”     If you are a caregiver afraid of contagion, inform yourself about how to take the precautions that avoid infection—June said she had “learned to be precautious”. While you are doing this, try not to communicate your fear to the person you are caring for. Make that person feel you are comfortable being around him or her.     Put the fear into perspective. Alan said, “I went to a therapist for a while. Then I had a big gigantic turning point. I was taking a shower and realized that all my problems were coming from the fear itself. Fear was creating all the problems, even the fear. Realizing that made the fear dissipate in a gush. Of course, it came back again, but it kept going away again too.”
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Some people who participate in research studies of HIV infection or clinical trials of treatments for HIV will be required to take the test as part of the study or trial, unless the test has already been done elsewhere.
To Summarize: People Who Should Get Tested
Those engaging in high-risk behaviors
•    Injecting illegal drugs
•    Having sex with gay or bisexual men
•    Having hemophilia with clotting factors administered before 1986
•   Being the regular sex partner of drug users, of gay or bisexual men, of hemophiliacs, or of people who have HIV infection
Those who engage in lower-risk behaviors
•    Receiving blood transfusions between 1978 and 1985
•    Having multiple sex partners
Those who have conditions associated with HIV infection
•    Tuberculosis
•    Sexually transmitted diseases, such as gonorrhea, syphilis, chlamydia
Those who have conditions suggesting HIV infection
•   Opportunistic infections that may accompany a diagnosis of AIDS, including Pneumocystis pneumonia, Kaposi’s sarcoma, cryptococcal meningitis, toxoplasmic encephalitis
•   Conditions that sometimes indicate HIV infection and are otherwise unexplained, such as weight loss, diarrhea for at least a month, or fever for at least a month
•    Low blood counts for which HIV infection is one of the many potential causes
People who may pose a risk to others
•   Women contemplating pregnancy, but primarily those with a higher risk of being infected, and those in cities or hospitals with a high incidence of HIV infection
•    Pregnant women, especially those with a higher risk of being infected, and those in cities or hospitals with a high incidence of HIV infection
•     People who have been the source of blood exposure to others
•     Donors of blood, sperm, or organs
Those who have been exposed to another person’s blood
Participants in research studies
Any person who desires the test
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Regardless of the circumstances of testing, whether the person asked for the test or the physician did, the person being tested should give informed consent. Informed consent means that the person must understand the limitations, benefits, and risks of the test, and must agree to have the test. If the person cannot understand or agree to sign the consent form, the decision about testing should be made by a representative of that person. Informed consent is recommended by the American Medical Association, the American College of Physicians, and virtually all other authoritative groups. In many states, informed consent is a legal requirement.
Exceptions are few: Persons donating blood, sperm, corneas, organs, or other tissue or body fluids must be tested. In these cases, the test is done to protect the recipient, and informed consent is not required. In extreme conditions when someone has been the source of exposure to a health care worker or has raped someone, and refuses to take the test, the test can be obtained without consent in some states or through a court order in others. Members of the military and the foreign service are also tested without consent.
The method of obtaining informed consent is highly variable in different places. Most places will have a standard consent form, along with a trained professional either to explain the test or to answer questions.
The information that is often included in the informed consent process includes the following: what positive, negative, and indeterminant test results mean; how accurate the test results are; how the person’s confidentiality is maintained; and what resources are available for people who test positive. All this information is provided elsewhere in this chapter or in “Resources,” which precedes this chapter.
In addition to being presented with this information, the person to be tested is usually offered the opportunity to ask questions, and the signed consent will often include a statement such as, “All questions regarding the test have been answered to my satisfaction.”
The following is a list of questions that are often not included in informed consent forms. If they are not, the person being tested may want to ask them:
Who will pay for the test, and how much does it cost?
Will results be communicated to family members, partners, public health officials, insurance companies, and so forth?
Are test results confidential or anonymous?
Where can an anonymous test be obtained?
How will the results be provided: in person? by telephone? by mail?
In the event of a positive test, what services are provided in terms of counseling, psychological support, and health care?
Testing carries an inherent responsibility for the medical and psychological care of people who test positive. The person tested should know in advance what resources will be provided for this type of care and support.
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