Learning to Support Yourself

How Do You Get Into Health Care?

Some people have few problems getting their health care costs covered by private insurance, which is generally funded by your current or former employer. However, many other people living with HIV rely on public health care programs or coverage funded by federal and state governments. These include Medicaid, Medicare, the Ryan White program and AIDS Drug Assistance Programs (ADAPs). Some of these are guaranteed for all who qualify while others have limited funding and may or may not be available in your area.

It is likely you can find some type of health care that you can afford or that's free of charge. The difficult part can be locating resources and piecing together affordable care by combining several services. A more thorough discussion can be found in Project Inform's publication, HIV Health & Wellness: Considering treatment and your health care.

A qualified benefits counselor can help you figure out a way through this maze, as can some case managers and social workers. Check with your local AIDS service organization, or Project Inform toll-free at 1-866-448-4636.

Telling Others About Your HIV Status

Telling others about your status can feel scary, but it may also help you cope. People who share this news may enjoy better health, probably due in part to relief of the stress of keeping their status a secret. Being open about your status with your medical providers can help ensure you get the most appropriate care.

You don't have to tell everyone -- or even anyone -- and you don't have to do it all at once. But finding people who can support you will go a long way to helping you stay healthy and improve your quality of life. Choose carefully who you want to tell and who you think will respond well to the news. Take your time when planning who to tell.

For some people, telling others can mean racing risk of abandonment or even violence. If you fear telling those close to you, find a support group, a therapist or a domestic violence assistance group to work through those relationship issues before you make final decisions.

Think about what you would do if your disclosure doesn't go well. Some people, even some health providers, may not react well. Be prepared for various reactions from those you tell and be ready to seek support if you need it.

Lining Up Support

Although many services exist for people with HIV -- such as medical care, support groups, peer mentors, and referrals to housing and other resources -- it's up to you to engage with them and decide if they're right for you. You may have to keep working at it because the first contact may not be the right fit.

Many people seek peer and other types of support during the first few months or years after their diagnosis. This can be a helpful way to get used to the new "surroundings," so to speak. Many people find this is a temporary but important way to seek help until they feel secure about what is needed. You may even find someone who becomes a friend or confidante because they've had similar experiences.

Case Manager/Social Worker/Benefits Counselor
Many community agencies have case managers or social workers who know their local social service system and can help you find resources. Talking to them regularly may solve some of the practical issues you face, like finding transportation, housing, a doctor and ways to cover your health care costs. Many organizations offer these services for free. Dial "211" for local service referrals, or call the HIV Health InfoLine for more information at 1-866-448-4636.

Support Groups/Friends
Support groups are one way to find a safe space to talk about your life. Studies show that people who participate in support groups enjoy better health and quality of life. It may take time to find one that suits you. Some people have even started their own groups. Check local community based organizations for referrals. You can also dial "211" to get local referrals, or call the HIV Health InfoLine at 1-866-448-4636.

Internet Chat Rooms, Blogs and "Ask the Experts"
Several HIV-related websites offer support anonymously. Thousands of people have used this type of support for ongoing help or even a quick answer to a nagging question. But be aware that there's a lot of misinformation on the Internet.

Laws Regarding Disclosure and Discrimination

Telling your co-workers or employers about your HIV status is a different type of disclosure and should be considered carefully before making decisions. Investigate your options with legal experts before disclosing your status at work.

Under the Americans with Disabilities Act (ADA), employers do not have the right to ask about a disability or your health before hiring you. People living with HIV/AIDS are protected under the ADA, which means your employer can't discriminate against you and must reasonably accommodate your physical needs at work. In order to get accommodations, you will need a letter from your doctor, but it can state that you have a chronic condition as opposed to having HIV or AIDS.

Some people who are concerned about testing for HIV fear that if they're HIV-positive they may experience discrimination. However, important federal and state laws prohibit both the disclosure of medical information and discrimination against HIV-positive people. The laws are not perfect and are interpreted differently in each state, so it's important to understand the limits of the laws in your area or jurisdiction.

Some states and foreign countries have laws that make it a crime to knowingly transmit HIV to someone else. While these laws are clearly meant for people who try to infect another person, they have been used to threaten or prosecute others. In fact, some laws state that transmission doesn't have to actually happen for possible prosecution. Though these cases are few, they're still a concern. It's important to know the laws where you live.

Important Questions

• Do you know of any support groups that might work for you?
• How can you get help paying for your health care and prescriptions?
• How's the relationship with your doctor? Do you work well together?
• Do you see an HIV-experienced doctor?
• What resources do you use to learn about HIV?
• Have you thought about taking HIV meds yet?
• What types of support have worked for you before?
• Is there anything to be concerned about now that you've gotten a full physical and test results?
• Do you know of a helpful case manager or benefits counselor?
• Are you worried about people finding out your status?
• Have you told anyone about your HIV status? How did that go?
• What things can you do to reduce stress?

Checklist for Getting Started

• I've found support people, such as a social worker or benefits counselor, who can help me find local services or care.
• I've found a doctor who's experienced in treating HIV.
• I know a doctor to go to for my first appointment.
• I've made my first appointment.
• I've found other providers, like a dentist or gynecologist, who understand how to treat people with HIV.
• I've written a list of questions for my first doctor visit.
• I've considered telling others about my status and have made a plan for how to do it.
• I've considered my emotional support needs and will seek help.
• I know how I'll pay for my health care, meds and tests.
• I talked to my doctor about the vaccines that I may need.
• I've talked to my doctor about the screenings I should get, such as hepatitis B and C, cervical and anal Pap smears.
• My first results are: ____ CD4s, ____ viral load.
• My second results are: ____ CD4s, ____ viral load.
• I know what these results mean.
• I've talked to people I trust about how to treat HIV.
• I know what I need to do to get ready for making decisions about treatment.
• If I have questions and my doctor's not available, I can call ________________ or _______________.

Online Resources That May Help