By Cynthia Teeters, MSW
HIV and Social Work: Helping You Cope With an HIV Diagnosis
Testing positive for the HIV virus generates many feelings. You may experience fear, anger, guilt, surprise, sadness, or relief. There is no right or wrong response to your diagnosis. Remember you are not alone; many people have been where you are now. Having HIV can be difficult and will be stressful at times. Thankfully, recent medical advancements have made living with HIV more manageable. There are many issues to consider that can help make your journey easier.
Talking About Your HIV Status
When coping with any medical condition, it is important to have someone to turn to for support. HIV is no exception. Unfortunately, the stigma that is often associated with HIV may make it more difficult for you to share your diagnosis with loved ones. This is a personal decision with no right or wrong answer. Many people struggle with whether or not to share their HIV status with family or friends. Certainly you do not need to share your private information with everyone. However, it is important that you should not try to go it alone. Try to find a natural balance that works for you.
Talking with loved ones about your HIV status may be stressful. People often cite fear of rejection, lack of understanding, or burdening family and friends as primary reasons not to disclose their diagnosis. If you choose to tell a trusted family member or friend, find a private time that is devoted to your discussion. Decide how much information you feel comfortable sharing regarding your illness and treatment. For instance, your loved one may have questions about the status of your treatment or how you contracted the virus. Remember, your loved one may need time to process this information. The initial talk will likely be the first of many discussions with your loved one as you both begin to learn more about living with HIV. Don’t forget to let your loved one know how he or she can be helpful to you (for example, by accompanying you to the doctor or by helping research support services). It is important to consider that by not sharing your status you may be depriving yourself of much needed support.
Handling Partner Notification
A very difficult question regarding disclosure is talking with a partner or spouse with whom you have had unprotected sexual contact. If they are advised of their possible exposure to the HIV virus, they can then be tested themselves. If they are not tested and have HIV, they may be at risk for progression of their disease to AIDS and death. Therefore, you should notify them as soon as you can. If, like some people, you feel unable to disclose your status to a sexual partner, there are some alternatives. Your doctor or, if you have one, your social worker or therapist, can help you with notification and can be present when you inform your spouse, partner, or prior sexual partners about their potential exposure to HIV. Also, in some states, there are Partner Notification Programs that can assist you with this very important process. Partner notification programs will contact a partner to advise that they may have been exposed to the HIV virus. Your identity and your HIV status will not be shared with this individual. You may want to contact your state health department to ask if they provide assistance with partner notification.
Considering Peer and/or Professional Support
Whether or not you choose to disclose your status to a friend or family member, you may want to consider joining a support group or talking with a counselor individually. You must decide what form of support will be most helpful. Joining a support group allows for information about coping with HIV to be freely shared in a safe environment. Most community-based AIDS service organizations run a variety of HIV-related support groups. These may include groups for women, gay men, parents, and people struggling with substance abuse and HIV. If you have a choice of groups or community organizations, you may want to shop around to find the agency that best fits your needs.
Some people may feel more comfortable addressing their concerns in a private setting. A therapist or counselor who is experienced in working with people with HIV can be instrumental in helping you sort out your feelings about your diagnosis as well as work with you during your decision about disclosure. It is important for you to find someone who is experienced and comfortable dealing with the issues facing people living with HIV. It is also important that you feel comfortable with this person so that you are able to open up to them and share your true concerns and feelings. Keeping secrets from your therapist will prevent you from accomplishing much with your time together.
Support Resources
If you are unfamiliar with the support services available in your area, you can contact the National AIDS hotline at 1-800-342-AIDS for local referrals and information. In addition, your local or state health department can be a valuable resource for connecting you with HIV/AIDS support services. There are also many online sites that provide peer support and information. Some examples are:
Finding an Experienced Doctor You Can Trust
Remember that you are the most important member of the treatment team. Be sure you find someone with whom you can work, ask questions, and address your concerns. When you begin to receive medical care for HIV, it is important to do your homework. Depending on your insurance plan, availability of physicians will vary. Learn about providers in your community that currently work with HIV patients. Most major hospitals will have physicians who specialize in treating HIV disease. You should look for a doctor who has experience with HIV, as treatments and medications are changing rapidly. Feedback from other patients can also help you choose a provider. If you are involved with a community organization or support group, ask other patients about their experiences with their physicians.
Depending on where you were tested for HIV, you may or may not be connected with a doctor. If you were tested at a health department or private testing site, their staff may be able to refer you to reputable HIV providers in your area. If you were HIV tested at your family doctor’s office, you may want to continue in his or her care. However, it is in your best interest to ask your doctor about the extent of his or her experience with treating HIV. It is important to receive medical treatment from an experienced HIV provider. When and if you and your doctor decide to begin treatment, it is very important to stick with the agreed-upon plan. If you are having any problems adhering to the plan (for example, taking medications as directed), contact your doctor as soon as possible.
Substance Abuse and HIV
Coping with HIV can be more difficult when also struggling with drug or alcohol use. Some people turn to drugs or alcohol as a method of blocking out difficult feelings or hiding from their HIV diagnosis. However, this is ultimately self-destructive behavior. Remember that using drugs and alcohol places an additional strain on your immune system and makes it difficult for you to do the things you need to in order to fight HIV. Many studies have shown that patients with substance abuse problems are much more likely to miss medication doses and to get sick.
Support for Fighting Drug and Alcohol Addiction
If you feel you may have a problem with drugs or alcohol, be proactive and ask for help. Fighting addiction to drugs and/or alcohol can be difficult. However, there are a variety of resources and support services available nationwide. Taking steps to address your drug and alcohol use will help you be more prepared to deal with your HIV diagnosis. The longer you put off dealing with substance abuse problems the more you may damage your body.
Some of the online resources for people with drug and alcohol problems include:
- National Council on Alcoholism and Drug Dependence
- Alcoholics Anonymous
- Narcotics Anonymous
- Addictions Resource Guide
Investigating Your Health Benefits
Medical treatments for HIV are very expensive. It is extremely important to be knowledgeable about your health insurance options. If you are currently covered by an insurance plan, investigate the limits of your policy. Explore whether or not you have access to an HIV specialist. Don’t be afraid to speak with a customer service representative should you have questions about your policy. Some people worry about their insurance companies learning about their HIV status. By law, if you are currently insured and test positive, you cannot be discharged from your insurance plan. If you have specific questions about your policy and do not feel comfortable talking with your employer or company representative you should consider contacting the National AIDS hotline at 1-800-342-2437 (AIDS). Hotline staff will try to locate a local case manager in your area who can help you investigate your plan.
AIDS Drug Assistance Program
You should also evaluate your prescription drug plan, since eventually, you and your doctor may decide to begin an antiviral regimen or other medications. Medications to treat HIV are expensive. You may find that your health plan has a cap on annual medication costs. For some people who do not have adequate prescription drug coverage, there is a federal program called the AIDS Drug Assistance Program (ADAP). ADAP was designed to provide access to expensive HIV medications for people who are considered to be underinsured or have no insurance. Eligibility for ADAP is determined based on your financial situation. Eligibility will also vary from state to state, as will the number of medications covered. States with larger numbers of people living with HIV tend to have a larger list of covered medications.
If you are currently unemployed or have a low income, you may be eligible for Medicaid. Medicaid is a federal program that provides health care for people who cannot afford to purchase insurance on their own. If you qualify for Supplemental Security Income (SSI), you will automatically receive Medicaid.
For state-by-state information on ADAP and Medicaid eligibility, you may contact The ACCESS Project at www.aidsinfonyc.org/network/access/index.html.
Protecting Yourself and Others
HIV is not easily transmitted. In order to transmit HIV, there must be an exchange of body fluids, blood, semen, vaginal secretions, or breast milk. HIV is often transmitted through unprotected sexual contact. This includes oral, anal, and vaginal sex. Using condoms will significantly reduce the risk of transmitting HIV to a sexual partner. If you or your partner have questions/fears about safer sex, don’t hesitate to discuss these issues with your doctor or therapist. If you are using intravenous drugs, do not share needles with others. HIV can be transmitted through breast milk, therefore new mothers are advised against breast-feeding. Women who are pregnant can take medications to reduce the risk of transmission to their child.
Educating Yourself
We are learning more each day about HIV and its treatment. Try to educate yourself in a reasonable way. Evaluate which methods of information gathering work best for you. Be careful not to overload yourself and don’t forget to stop and take a breath. Most of all, ask for help when and if you need it. Many people living with HIV continue to lead active lives after they are diagnosed. By working closely with your doctor and leading a healthy lifestyle, you can continue to lead a happy and productive life.
© 2005 Healthology, Inc.
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