The HIV-AIDS Support Center

Every person is unique, but when you face a challenge like HIV (Human Immunodeficiency Syndrome) and AIDS (Acquired Immunodeficiency Syndrome), you are never alone.  Countless men, women, and children have faced exactly the same diagnosis and have survived and thrived.  The following guide is designed to help you navigate your journey with the best information and resources that helped other survivors when they faced the same challenge.  

TSC has scoured the Web to gather together links to the very best HIV and AIDS resources: articles, blogs, forums, and tools that can help you make better decisions and take action to overcome the range of physical, emotional, and other challenges you're facing now.

As you’ll see, we always welcome your ideas and suggestions to make this HIV/AIDS guide even more helpful to survivors like you.   

JUST FOUND OUT 

Survivors Say: Best Resources for HIV and AIDS

• AIDS.gov
• Centers for Disease Control and Prevention - CDC HIV/AIDs Fact Sheet

The Big Picture

HIV (Human Immunodeficiency Virus) is a viral infection that attacks the immune system.  Left unchecked, HIV develops into AIDS (Acquired Immune Deficiency Syndrome) in which the immune system is compromised to the point that almost any infection can become fatal.  

The HIV virus is most commonly transmitted in one of four ways:  

• Through unprotected sexual intercourse
• Through the sharing of infected needles
• Through mother’s milk (breastfeeding)
• Through transmission from mother to child during childbirth

There is no known cure for this often deadly disease, although drugs can usually keep the virus in remission for many years.

Many people who are infected with HIV have no symptoms, but if you suspect that you have HIV or that you may have been exposed to the HIV virus you will want to be tested immediately:

AIDS.gov: Testing

CDC: How can I tell if I'm infected with HIV?

Your HIV/AIDS

A diagnosis of HIV is extremely serious. It's vital that you learn as much as you can about the disease, how long you have had the virus, and what treatments are available. Your doctor can help you with answering all of the questions. You may want to get a second opinion and/or a second (or third) test to confirm you are HIV-positive and that you haven't been misdiagnosed:

Wrongdiagnosis.com: Misdiagnosis of HIV/AIDS

AIDS.gov: How do HIV tests work?

It is important for you to know what questions you should ask your doctor when you think you may have HIV:

WebMD.com: 10 HIV/AIDS Questions to Ask Your Doctor

U.S. Department of Veteran Affairs: National HIV/AIDS Program - Questions to Ask Your Doctor About Your Diagnosis

Your World

After being diagnosed with any disease that's potentially fatal it's understandable to experience a flood of emotions. Talk with your loved ones and reach out to support centers (online or in person) during the initial stages of your journey, which may be the most difficult as you look for information and figure out your treatment plan and prognosis (outlook). For help and support now look to these resources:

HIV/AIDS/HEP C Nightline

Poz.com Community

Dailystrength.org: HIV Support Group

GayPoz.org: Online Support for HIV+ Gay Men

Your diagnosis of HIV is hard on you, certainly, but it may also be difficult for those closest to you to accept this news and to know how to support you:

A Positive Life: Telling Your Partner

A Positive Life: Telling Your Family 

A Positive Life: Telling Your Friends

Centers for Disease Control and Prevention: Providing Emotional Support for Someone with AIDS at Home

HIV/AIDS Myths

• Womenshealth.gov: Women and HIV/AIDS - Myths
• WebMD.com: 10 HIV/AIDS myths
• CDC.gov: HIV/AIDS: Rumors, Myths & Hoaxes

Information and Recommended Links for Survivors

• WebMD.com: HIV and AIDS - Living and Managing
• Centers for Disease Control and Prevention: Living with HIV/AIDS
• AIDS.gov: Treatment and Care

Types of Treatment

While there is currently no cure or vaccine for HIV/AIDS, people living with HIV disease can benefit from an array of antiretroviral therapies and other services that have proven effective against it. HIV is now managed as a chronic, long-term disease for many Americans

Medication

The sources offer good overviews of drugs - antiretroviral therapies - currently available for HIV and AIDS survivors:

National Institute of Allergy and Infectious Diseases: Treatment of HIV Infection

AIDS.gov: Treatment and Care

Mayoclinic.com: HIV/AIDs Treatments and Drugs

Some AIDS drugs do have side effects:

4woman.gov: HIV/AIDS Drugs Can Cause Side Effects

eHow.com: How to Manage AIDS/HIV Treatment Side Effects

New Therapies

Scientists are developing new HIV therapies at an astounding rate. Educating yourself about the newest treatments could give you more options to discuss with your doctor:

Thebody.com: HIV Drugs in Development

Holistic Treatments

While few people are recommending that HIV patients stop their current regimen of antivirals, many agree that such treatments may lose their effectiveness over time.  The answer may be to add in a holistic approach to rebuilding the body’s defenses naturally:

Associated Content: A Holistic Medicine Approach to HIV Treatment

Alternative & Home Therapies

Some alternative/complementary medicine therapies -- as well as simply choosing a healthy lifestyle -- can be very useful to those with HIV or AIDS: 

Thebody.com: Beyond Medication - Healthy Living for HIVers

Creating a Support Circle

• Set up your TSC survivor profile.
• Join support groups of other survivors or set up your own.
• Interact and provide updates on your profile or in the TSC forums.

Insurance & Work Matters

Insurance Matters

Treating HIV with the traditional drug “cocktail” of antiretroviral medicines can be expensive.  Here's what you need to know about health insurance if you have AIDS or are HIV-positive:

Thebody.com: Ask the Experts About Workplace and Insurance Issues

You have the right to keep your health information private, according to U.S. federal law:

U.S. Department of Health and Human Services: Office for Civil Rights -- HIPAA

Work Matters

Telling your boss or coworkers that you are HIV-positive or have AIDS is an emotional and sensitive issue:
 
Thebody.com: Disclosing HIV in the Workplace

Health-care Providers Who Can Help

You may see a variety of medical specialists for treatment of your HIV or AIDS, from a general practitioner to an AIDS specialist to mental health experts and others.  Your primary doctor will help evaluate your particular case and your individual needs: 

AIDS.org: Choosing an HIV Care Provider

Resources to Find Doctors

• About.com: AIDS/HIV - Finding a Good HIV Doctor
• MyHIVLife: How to Choose a Healthcare Provider

The Emotional Rollercoaster

A diagnosis like HIV or AIDS can bring up many feelings - panic, sadness, anger, worry, fear and more. Some survivors find that dealing with the emotional side of HIV/AIDS can be even more difficult than finding their way through the physical aspects of the illness. Try to continue living your life as normally as possible, participating in the same daily activities you've always done.

Support groups can be an important part of staying on an even keel emotionally now. Also, continue educating yourself about HIV and AIDS and read stories by those who are successfully living with HIV; these personal experiences can help give you and your loved ones hope while dealing with this crisis.

Books Survivors Recommend

• And the Band Played On: Politics, People, and the AIDS Epidemic by Randy Shilts
• Being Positive: The Lives of Men and Women with HIV by Robert Klitzman 
• Built To Survive: HIV Wellness Guide Fourth Edition by Michael Mooney and Nelson Vergel 
• I’m Still Here: The History, Testimony, Education, Outcomes and Strengths of People Living With HIV/AIDS by Venus Perez
  

Communicating with Your Health-care Providers

• Bring a friend or family member with you to your appointments, not only to provide support but to lend an extra ear; they can help you understand and remember what your health-care provider discussed and ask questions you hadn't thought of.
• Don't be afraid to ask about anything you feel you need the answer to, even if you may be scared to hear the answer.
• Write down any questions ahead of time and jot down the answers as your health-care provider walks you through them. Don't be afraid to ask for clarification on anything.

Dealing with HIV/AIDS: Information and Recommended Links for Co-Survivors        

How You Can Help

• Assist your survivor with their day-to-day duties or chores if they need help, but be sure to find a good balance that doesn't throw off their usual routine.
• Preserve your survivor's daily activities; it's normal to feel protective but excluding your loved one from activities or decisions may contribute to feelings of helplessness.
• Involve your friend or family member with others and don't focus exclusively on their disease when interacting with them.

What to Say    

• "I will support your decisions about treatment."
• "You seem upset; do you want to talk about it?"
• Tell them how much you care about them.

What Not to Say

• "Don't worry, we'll find a way to make this all go away."
• "We'll go to every hospital and spend as much money as it will take to get you well."
• "You won't have to lift a finger; I'll do everything."

Things You Can Do for a Survivor Every Day

• Offering day-to-day support is a great gift to give to a family member with AIDS or a friend/neighbor that has been stricken with this disease. If the survivor isn't a family member, help out the survivor's family when they're away for treatment by picking up the mail or newspaper, making meals, going grocery shopping, etc. If the survivor is a family member, help out with chores or other duties they may have fallen behind on.

How to Build a Support Network

• Set up your TSC co-survivor profile.
• Create a support group for your friend or family member.
• Interact and provide updates.

How to Help a Survivor Deal with Day-to-Day Challenges

• Tips on returning to work after HIV treatment:  About.com: AIDS/HIV - HIV and the Workplace     

In the early 1980s, when the AIDS epidemic began, AIDS patients rarely lived longer than a few years. But today, people infected with HIV, the virus that causes AIDS, have longer and healthier lives. The main reason is that there are many effective medicines to fight the infection. While medications help people with HIV, they are not perfect. They do not cure HIV infection or AIDS. People with HIV infection still have the virus in their bodies, so even when they are taking medicines they can transmit HIV to others through unprotected sex and needle-sharing.

Remission / Recovery / Recurrence    

Drugs can keep many symptoms of HIV under control, but if you do experience a relapse it can cause for tremendous emotional stress. These drugs treat complications of HIV and AIDS:

U.S. Food & Drug Administration: Drugs Used to Treat Complications of HIV/AIDS

Living longer with HIV/AIDS has a lot to do with how healthy your lifestyle is too:

About.com: Living with HIV/AIDS - A Healthy Lifestyle

Give Back

What helped you while you were dealing with the diagnosis, undergoing treatment, and getting your HIV/AIDS symptoms under control? Take a look back at your journey and share with others what helped you and what you wished you would have known or done during your HIV experience. You can create a TSC profile, reach out to other survivors, join support circles, or share your story by following the links at The Survivors Club.

Check out some of the best charities for supporting HIV/AIDS research or offering support to survivors:

CellScience: AIDs and HIV Charities and Support

Dying of AIDS is far less common than it used to be, but the unfortunate truth is that it does still happen. Because HIV weakens your immune system, any of those who succumb to AIDS do so through an infection that grows worse:

• Mayoclinic.com: HIV/AIDS - Complications

If your HIV has progressed to AIDS and you've found out that it is fatal, you may find that you and those who love you are unprepared for this, the worst case. Here are some resources to cope during this extraordinarily difficult time:

When You're Facing Death

• FamilyDoctor.org: Cancer - Palliative
• CareMedlinePlus: Hospice
  
• CareMedicinenet.com: Loss, Grief and Bereavement