Self-Advocacy: Learning to Support Yourself
Part Three of Three in Project Inform's "After You've Tested Positive" Booklet
Some people have few problems getting the cost of their health care covered by private insurance, which is generally funded by your current or former employer. However, many people with HIV rely on public health care programs or coverage funded by federal and state governments (Medicaid, Medicare, Ryan White, and AIDS Drug Assistance Programs).
You can probably find health care that you can afford or that's free of charge. The difficult part can be locating these resources and putting together affordable care by combining several services. Read pages 19-21 in Project Inform's publication, "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 go online to www.asofinder.com.
Main Points to Remember
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 relieving the stress from keeping it a secret. Being open about your status with your medical providers can help ensure you get the best care.
You don't have to tell everyone -- or even anyone -- and you don't have to do it all at once. Choose carefully who you want to tell and who you think will respond well to the news. Think about what you would do if it doesn't go well and be prepared for various reactions, even from doctors and nurses.
Telling others could also mean facing the 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.
Main Points to Remember
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.
The Americans with Disabilities Act (ADA) state that employers do not have the right to ask about a disability or your health before hiring you. People with HIV are protected by the ADA, which means your employer can't discriminate against you and must reasonably accommodate your physical needs at work. If you need accommodations, you will need a letter from your doctor, which can state you have a chronic condition as opposed to having HIV or AIDS.
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.
Some states and foreign countries have laws that make it a crime to knowingly transmit HIV to someone else or even to fail to disclose your status to your sex partners. While these laws are clearly meant for people who try to infect another person, they have been used -- especially in some states -- to threaten or prosecute others. In fact, some laws state that transmission doesn't have to happen for possible prosecution. It's important to know the laws where you live.
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 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.
Case Manager/Social Worker/Benefits Counselor
Many community agencies have case managers or social workers who can help you find local resources. Talking to them may solve some of the practical issues you face, like finding transportation, housing or ways to cover your health care costs. Some agencies offer these services for free. Dial "211" for local service referrals, or use the Resource Finders below.
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.
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.
Resources for HIV Care
State AIDS Hotlines
This article was provided by Project Inform. Visit Project Inform's website to find out more about their activities, publications and services.
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