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A Personal Story

December 2003

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

A Personal Story

Lorraine Brown is a Client Advocate for McDowell Health Center in Phoenix, AZ. She has been positive for 18 years. Lorraine contacted Project Inform to share her personal story. As she spoke up for herself, doors were opened for her and her family. Lorraine now works as a client advocate encouraging other positive women to speak up for themselves and those they love and care about. Her story is one of strength, determination, persistence and ambition. Read on for words of wisdom!

How did you become a client advocate?

I was a volunteer at the clinic I currently work at and my supervisor said that they had a position open for a client advocate. Before that, I was trying to get disability and I got denied three times before I got it. I had to stay with my folks because I could not afford my rent. The disability office said that because I stayed with my folks I didn't need disability. I kept calling and going to their office with papers from my doctor stating that I was disabled. I told them that by denying me disability, they were causing my children to be homeless, without clothes and hungry. They eventually knew who I was and recognized my voice when I called and realized that I was not going to stop calling or coming in until they gave me disability. I made sure that I provided for my children.

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You need to be persistent and stick to it. Let them hear your voice and see your face. You have to stick to your agenda and don't beat around the bush. Always state the bottom line, this is what I can and cannot do without this program ... I have no roof, I have no clothes for my children or myself, I have no food.

What has made advocating for yourself easier?

The support of my family. The best way to find out if someone cares for you is to disclose to them [that you're HIV-positive]. If they really care about you they will stand by you. Having someone there to support you makes your fight easier; they can fight for you when you're not able. When I was very sick with severe thrush and unable to get out of bed, I ran out of food stamps. My parents went and spoke for me, with a note from the doctor explaining my situation and how important it was for me to have those food stamps.

By telling my family [about my HIV] they have gotten to know me better. They realize how it can affect them and that they may be doing things that are high risk [for HIV infection]. My brother and sister were engaging in high risk behavior and didn't even realize it or think about it until I disclosed. I found out that I had two cousins who were gay and positive and they had not disclosed.

When you disclose to family and friends, remember these four important things:

  • Know the reason why you want to tell them.
  • Have someone with you who is supportive, so they can support you if you're rejected.
  • Prepare yourself for rejection.
  • Remember that even with rejection, something good can come. You have left someone with education, with information that they may have otherwise not had.

What were some of the challenges you experience in advocating for yourself?

When I was first diagnosed, the first thought that came to my mind was what was my family going to think of me? I was not accepting what was happening to me. I didn't know I was at risk, so my diagnosis was a surprise to me. The providers didn't know what to do with me because I am an African American straight woman, not a gay man!

When I met another positive woman undergoing some of the same things I was going through, I was realized that I was not alone. She helped me find the support and resources that I needed.

I told my sister six months after my diagnosis. We cried and laughed together. I brought her along with me as I as told other family members.

How have you advocated for yourself with your doctor?

When I moved to Arizona I heard about an HIV specialist who was supposed to be really good. I brought copies of my medical files from my other provider and went to see him. I started menopause early and had been on hormone replacement therapy. My new provider in Arizona told me I was too young to be starting menopause and the symptoms that I had were probably a result of my regimen, which were Kaletra and Sustiva at the time. He changed my meds to Trizivir and Viramune. I started to experience neuropathy and sharp pains in my breasts to the point that I was unable to get up, and the pain was so bad I couldn't be active and take care of my kids. My doctor prescribed me Neurontin. Every time I went to the doctor and would tell him that I was not able to handle the neuropathy, he just kept increasing the Neurontin.

I finally told him that he was not listening to me. I wanted a working relationship with my doctor and unless he was looking to work with me, I will need to take my care elsewhere. I told him, "I am firing you." He told me that he had never been fired, and then refused to forward my files to my new provider. I had copies of all my medical files and took them to my new doctor.

I called my case manager and asked for a list of both HIV specialists and primary care providers who had an interest in HIV. I called everyone on that list and made a stack of docs who took my insurance.

On my first day with the new doctor, I brought a list of questions. I asked her opinion on her patients wanting to try alternative therapy. She said as long as I tell her everything that I am doing and bring in a list to her, she was fine with that. I asked her, "If I tell you that I have an issue with something will you address the cause?" I explained to her my previous issues with my doctor and then we talked about my records. After she answered all my questions, I told her, "You're hired." She put me back on my old regimen and told me that she would run some tests to validate everything from the records. When I left she told me, "Just let me know what you're doing with your health, whatever it is."

I also found a naturopathic doctor (NP) who has helped me to find other ways to deal with my neuropathy. My NP and my primary doctor talk. I want them to work in sync. One day I had my NP call my primary care doctor while I was there, and my primary care physician always faxes my lab work to my NP. I told them both, "I hired you guys to give me the best quality care, and I want you both to work together on this." It's important to remember that you have to make it happen, whatever it is. Now the two of them do workshops together!

What kinds of questions do you think someone should take to their provider when they're interviewing them?

It's important to be prepared. It's important to make sure you're going to get the care that you need. It is different for different people. Know what your cause is. What is it that you want to get? What is important to you? For example, the Neurontin made me drowsy, and I didn't like that. It was important that I find another way to deal with the pain and that I had a doctor who would work with me. So it was important that they be receptive to alternatives to dealing with neuropathy. What do you expect from your doctor? It's about you and what you want. The key thing is that you know your own issues and concerns. Advocating for yourself means homework; you have to find out what is out there.

Any final words you would like to share?

With HIV or any other disease where you can be here today and gone tomorrow, it's important to look around you. Enjoy what's around you. Be grateful you have the chance to experience these things. I use affirmations to help me realize my self-worth. I allow good things to happen in my life. Feel worthy. Think to yourself, "I am worthy of this." Enjoy what you have that is good and believe that you are worthy of it!


Back to the Project Inform WISE Words December 2003 contents page.

A note from TheBody.com: Since this article was written, the HIV pandemic has changed, as has our understanding of HIV/AIDS and its treatment. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!



  
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This article was provided by Project Inform. It is a part of the publication WISE Words. Visit Project Inform's website to find out more about their activities, publications and services.
 
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