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How I Became an HIV Advocate
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What comes to your mind when you think of the word advocate? For some, it’s something legal like a lawyer, or perhaps a social issue activist or a social worker, but in actuality we’re all really advocates. We talk to our children’s teachers to see what can be done to improve their education. We talk to our doctor about treatment options and alternatives, or we might raise our voice at a town hall.

We advocate all the time in some form or another. We advocate for those we love, we advocate for ourselves, and we advocate for our community. So advocacy is very much part of all of our lives whether we realize it or not.

I remember when I honestly had no idea what the word meant. I had never really advocated for myself before. I didn't go to town hall meetings and I did whatever the doctor said without question. I didn't want to be the one to rock the boat. But that philosophy nearly killed me when I had a diagnosis disagreement with my doctor 21 years ago.

I had been having trouble breathing. I was a heavy smoker at the time and thought I was developing COPD or emphysema, but my doctor kept treating me for anxiety. I told him I strongly didn't believe that it was anxiety, but he never changed his treatment strategy -- and I didn't protest enough. Soon after I would find myself in the hospital dying of pneumocystis pneumonia (PCP)  -- I had AIDS but he never tested for that. Would he have tested more extensively if I had used my voice more assertively? If I had been more confident to speak up to “The Doctor” and let him know that I KNOW MY BODY? Yes!

Doctors are human, too. They can make mistakes, they can forget, and they can be wrong. Most doctors truly want to work with you in partnership to achieve your best outcome, but the only way to truly do that is with our participation. We must advocate for ourselves in our health care and play a major role in our own well-being.

In 2016, I realized that not only was it important to advocate for myself, but I also felt a need to advocate for others as well. After years of going to an AIDS service organization, I learned a little about its history and how it struggled to exist in its beginning. Had there not been advocates to lobby for funding and other things for this organization, it might not have existed to save my life at all. This idea (that I now live because someone else advocated for me) sparked my interest in advocacy, and I became an HIV advocate myself.

Now I try to educate the public about the modern realities of HIV. I work with national advocacy organizations, health care organizations, and social media as well. I do what I can to advance an end to HIV-related stigma for myself and others. I've spoken with state and federal congressional leaders for funding and policies that truly help (rather than hurt) the HIV community. I've worked on community advisory boards to help guide health care organizations to develop the best services for the community.

Advocate is not a dirty word, it's just someone who gets things done to make life a little better for themselves and others. We all advocate for ourselves in our health care and in our lives, and it's so important that we do. But advocating for others is a special reward, perhaps one that you may never see -- but you feel.

When I became an advocate, to be honest, the word intimidated me a little. I thought it meant that I had to be an expert and have lots of education with an alphabet after my name. But being an advocate only really requires one thing, and that's a desire for change.

If you see a need in society, in your life, or in the lives of others in your community and are willing to talk to those who can make change happen, then you're an advocate. Your passion and desire to make a difference is all you need. There are advocacy organizations for lots of causes. Find the one that suits you best and don't be afraid of the word advocate. Perhaps you could be the difference that saves someone else's life -- or your own.



Photo Credit: RyanKing999 / iStock / Getty Images Plus

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Katie Willingham

Katie Willingham

Diagnosed since 2000

Katie Adsila Willingham is a woman of transgender experience from rural northwest Alabama. She has been living and thriving with HIV since 2000 and became an advocate in 2017. Willingham is a Community Advisory Board member and blogger for The Well Project’s A Girl Like Me, raises awareness of HIV issues with the Alabama Poz Life Facebook group, and is Alabama state lead for Positive Women's Network USA.

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