(Photo credit: Stephanie Grossman Photography)
Table of Contents
- Self-Advocacy in Healthcare
- Individual Advocacy for Others and Peer Advocacy
- Community Advocacy
- Political/Public Advocacy
- Serving from a Full Cup: Self-Care for Advocates
- Many Possibilities
What is an advocate? By definition, an advocate is a person who publicly supports or recommends a particular cause or policy. However, if the thought of being an HIV advocate in public makes you nervous, there are other types of advocacy that might be a first step. You may know that you want to do something, but you may not know what to do or where to start. This is why learning more about different forms of advocacy can help you realize that you are already an advocate almost every day.
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You might not think of yourself as an advocate, but in many ways you already are. Every time that you speak up for yourself or others, you are an advocate. It may be as simple as letting the cashier at the grocery store know that she overcharged you for an item or telling your children not to speak to you disrespectfully. It can also be more difficult, like fighting for disability status or filing a complaint with human resources for discrimination or harassment at your job. You are likely an advocate for yourself or someone else every day in one way or another.
Much of your advocacy as a person living with HIV (HIV+) probably revolves around your health and the health care you receive. To get the best care possible, it is important to speak up for and support yourself. Below are some ways you can advocate for yourself with your health care team:
- Learn as much as you can about HIV, your health, and your treatment options
- Make a list of questions for your health care provider before your appointment
- Ask questions about the medications you are taking or new medications that you have heard about
- Ask your health care provider for an explanation anytime you do not understand something he or she says
- Take notes during or immediately after your visit so that you can remember the important points when you get home, or invite a friend or family member to the visit who can do the same
- Discuss health issues that are on your mind with your provider, even if they do not seem like a big deal
- Ask for and keep copies of all of your medical records such as lab results
- Get a second opinion about any important health issue
- Offer suggestions and feedback to your healthcare team about ways to improve services for people with HIV
Individual advocacy refers to supporting someone when they need help, or trying to find a solution when someone has a problem. You likely advocate for other people often in your daily life, yet you may not think of advocacy as the word to describe what you're doing.
Examples of being an individual advocate for others:
- Helping an elderly neighbor figure out local shuttle and bus schedules so she or he can continue to live independently without driving
- Contacting school officials after learning a child was bullied at school
- Practicing or role-playing a difficult conversation that a friend expects to have with her boss
- Writing or calling city officials to improve or address an issue in your community
Examples of being an HIV peer advocate:
- Helping someone in your support group who is having trouble understanding HIV treatment materials
- Linking a friend to a better health care provider after hearing she was not getting her questions answered or the care she needed
- Volunteering at an AIDS Service Organization (ASO) to be a resource/peer advocate for people who are newly diagnosed
It can be a wonderful thing to advocate on your own or someone else's behalf. It can also be very empowering to work together with a group of people; when more than one person speaks up about an issue, the message can be even stronger.
Community advocacy is a larger version of the individual advocacy that you may already practice in your daily life. The difference is, community advocacy involves groups of people acting to affect positive change. Before getting involved, decide how comfortable you are about disclosing your HIV status. This is a personal decision that requires careful thought and discussion with people close to you. Whether you decide to go public with your status or keep it private, you can still be a community advocate.
There are many things you can do. For example, you can speak at a church or other organization about the needs of people living with HIV or HIV prevention. You can get involved with local HIV awareness and fundraising events by participating in an AIDS walk or other AIDS event. You can join a patient advisory group at an HIV research site, an AIDS service organization, or an HIV planning council. For more information about joining advocacy groups in the community, read our article A Place at the Table.
You can also advocate on behalf of your community through the media, including social media. To learn more, see our article on Talking to the Media and Using Social Media.
If you are interested in politics and policy and want to help make a difference on a national or international level, you may consider becoming an advocate that focuses on policies that impact HIV treatment, funding, gender equality, women-centered health care, criminalization, or other issues. In these areas of advocacy, you might be asked to call, visit, or write letters to government officials. If this is of interest to you, most groups will provide some form of training to volunteers or interns to help people learn how to become public or political advocates.
Around the globe, there are many amazing advocacy organizations fighting for the rights of people living with HIV. Below are some examples:
Global advocacy groups:
- ATHENA Network
- Center for Health and Gender Equity (CHANGE)
- Global Coalition on Women and AIDS (GCWA)
- International Community of Women Living with HIV (ICW)
- International HIV/AIDS Alliance
US-based advocacy groups:
- Advocates for Youth
- AIDS United
- Black AIDS Institute
- Center for Women and HIV Advocacy (HIV Law Project)
- National Minority AIDS Council (NMAC)
- National Women and AIDS Collective (NWAC)
- Positive Women's Network - USA
- SisterLove, Inc.
- Treatment Action Group (TAG)
Serving as an HIV advocate can be a very rewarding experience, especially when you see the difference you are making in people's lives. However, if you are constantly giving and not taking time to refill yourself, you put yourself at risk for burnout. Burnout is not a clinical diagnosis, but rather a state of physical and/or emotional exhaustion that is often accompanied by a loss of passion or a sense of detachment from your work.
If you are burned out, you may find yourself feeling cynical about your work, or doubtful of your effectiveness. You may also find yourself feeling overwhelmed, numb, frustrated, bored, or unappreciated. If you find yourself also feeling hopeless, lacking interest in many activities (not just work), having trouble sleeping or concentrating, or not taking your HIV drugs, you may be depressed. Unlike burnout, depression is a medical condition. If you think you may be depressed, it is important to talk with your health care provider. For more information, see our article on Depression, Women, and HIV.
Just as each tide ebbs and flows, each person has natural and necessary periods of activity and rest. Exhaustion is a normal reaction to high levels of stress and is not necessarily a sign of illness. HIV advocacy can be particularly stressful because there a so many areas and people in need of advocacy, and people's lives are at stake. But denying yourself proper rest and replenishment, even when others are in need and the cause is worthy, can have serious negative consequences on your mental and physical health.
Caring for yourself ("self-care") – which may include taking some of the very advice you are sharing with others – can break the stress cycle that leads to burnout and enable you to recover your energy and passion. It is important for you to pay attention not only to what drains you but also to what fills you up or re-energizes you. This will be different for each person. Do you need more sleep? Time outdoors? A good laugh? Some time to journal? An evening out with friends? All of these are opportunities to refill your cup and avoid burnout. For more ideas, see our article on Stress Management.
Consider what would it look like for you to serve from a full cup. You will have so much more to share with others if you fill your own cup first.
There are many ways to be an advocate. Some of them are larger and require a lot of time and commitment. Some are more public and may seem confrontational. However, being an advocate does not necessarily mean speaking to the media, meeting with politicians, or participating in rallies and demonstrations. There are many smaller ways to be an advocate that are just as valuable. Take your time in looking at your options and finding the best fit for you. Becoming an advocate for yourself, another person, or large numbers of people can be very rewarding and empowering.
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