a man with HIV interviewing a doctor

Self-Advocacy: Your Doctors Work For You

In my 32 years living with HIV, I came to learn one hard lesson: your doctors work for YOU. Once you have given them your payment information, they are under your employ. You have paid them to render a service and, just like with any job, if they don’t provide the quality of service you need: Let them go.

As someone that has been living with HIV since birth, I have discovered that I have many unique health needs compared to your average person in their early 30s. Constant inflammation and side effects from meds have taken a toll on my body. Because of this, I need providers to take my requests and concerns seriously. Self-advocacy is how I make that happen.

Advocacy applies to our HIV care too

When a lot of people in the HIV community hear “advocacy,” they think of all of the wonderful people that stand up and refuse to let people with HIV live and suffer in silence. That put a face to our issues and bring our needs to light. The same applies to ourselves and our care.

My primary care sent me to a specialist for my GERD. The specialist came in and I told them about my ARVs and taking some that were known for causing gastrointestinal damage. I also told them the current over-the-counter meds I was taking to help alleviate my symptoms.

The visit with the specialist was discouraging

They nodded, refused to test me further because of my AGE (see previous paragraph), and just gave me a prescription level dose of what I was already taking and sent me on my way. They told me on the way out of the room to call back for a refill or if my symptoms got worse. I was so discouraged because of their lack of taking my status and meds into account and only focusing on my age, I refused to go back. My primary understood and continues to work with me to find another way.

Self-advocacy helps doctors improve on our HIV care

Another important note: not everyone needs an infectious disease (ID) specialist. My primary care and HIV care are both handled by the same ARNP. They are wonderful and listen closely to all I have to say, actually taking the time to address my concerns. I chose them because I knew their reputation from working with their organization and wanted to experience it for myself.

First impressions are important

Let me say that again: I CHOSE them. Before that, I was directed, by my local Ryan White organization, to an ID specialist. The specialist is well known and is very knowledgeable. However, I did not feel a very good connection during my first visit.

Yes, first impressions really are everything. That first appointment, for me, is their interview. There is nothing wrong with taking time after an appointment and asking yourself the question, “Did this visit make me want to come back in 3 months?” My current provider connects with me and encourages my self-advocacy because it helps them to better my care.

We know ourselves best

You are the only expert on you. No one else in this life knows you and your needs more than you do. Meds have side effects that reduce your quality of life? Ask your doctor about other options. Too many pills? Ask about other options, like single-tablet regimens. Want to know more about what your labs mean? Ask your doctor to explain them in terms you can understand. If your provider cannot take time for you, then search for other options.

The need for nonjudgmental providers

Stigma will also rear its ugly head, even in clinical settings. I have experienced having the mood in the room change when I say that I am having not only have sex, but I am also having sex without a condom (I have been undetectable for almost 20 years). Sexual health as someone with HIV is extremely important. It’s a conversation that you and your provider have TOGETHER.

And that’s what it’s really all about: being able to communicate with your providers.

Ways to better advocate for your care

Now, I realize I have the privilege of living in an area with a multitude of providers and that not everyone has the option for an abundance of choices, but it never hurts to ask. That’s what case managers are for. Use your local services to the fullest.

Never be ashamed to ask for all the help you actually need. It was hard for me to swallow my pride and admit that, in spite of my career, I still needed extra assistance.

In closing, the true purpose of self-advocacy is to help you to stay in care. If your provider shows interest in your needs, YOU will have more interest in your needs. Your main goal in managing your HIV is to find care that makes you want to stay in.

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