How (and Why) I Took Control of My Treatment Plan
I could not choose the time and place I became HIV positive. But I did decide when and why I would begin my treatment. I believe my ongoing participation in decision-making is why I have had success in my battle with HIV.
A positive diagnosis can be a life-changing event and feel like the end of the world. It can be easy to sit back and allow others to make decisions in that space. But they don't always have the whole picture, even when they are professionals.
They certainly don't know your feelings - you are the only one with that internal insight.
How do you feel about your relationship with your current doctor?
Where my treatment advocacy started
In 1994 there were 3 approved medicines for combating HIV. When my doctor suggested I start AZT, I declined. I knew from the anecdotal comments and the sparse medical information available that I wanted to wait, and I'm glad I did.
Just a few months later, not only did viral load testing become widely available, but an important clinical trial on combination therapy was published.
I think it's important to note that I was not in a critical, life-threatening situation. Though extremely low, my T-cells had not reached the point of putting me at risk of progressing to AIDS anytime soon. But it was close, and I wanted to use the time given to me wisely.
I reviewed the information from the trial and chose a combination that resulted in the deepest reduction of HIV viral activity in the bloodstream. Unfortunately, it also created some of the worst side effects, including peripheral neuropathy.
After a lengthy discussion in which I presented the trial results and options for monitoring and treating neuropathy, my doctor prescribed the medicines. The combination worked, and my viral load dropped significantly while my T-cells rebounded.
I have been on a roll ever since when it comes to advocating my treatments.
A new diagnosis and new choices
One of the unexpected results of successfully controlling my HIV load was that I mainly battled side effects. The burden and threat of opportunistic infections had been lifted from my life. So, when I was recently diagnosed with cancer, I felt shocked and spent several weeks in a mental fog.
Because the cancer was caught early, I was not in a live-or-die situation. But I had to make some choices.
Old habits kicked in
Despite overwhelming emotions, I put myself in decision-making mode. I wrote down the questions spiraling in my head. This stopped the cycle of repeatedly thinking about the same thing and helped clear my mind.
I took notes when I talked with the doctors. Then, I would grab hold of my fears and do some online research from reputable sources. I created a timeline of what tests needed to take place, how long the results would take to return, and what options were available for positive and negative outcomes.
What was I trying to control?
The only thing I can control is how I react to the information I receive. It's okay to become emotional. Many days, I only wanted to sit in a corner and cry. And sometimes, I did just that.
But other times, I had to sit up straight and clear my head to examine what was presented. I had to take notes, ask questions, and, most of all, inquire when I had to decide what I wanted to do.
What am I doing now?
First, I make sure not to feel alone. I have opened up about my diagnosis to friends who have been through similar situations. Talking to someone allows me to take my thoughts out of my head and examine them objectively.
This process is essential to filter out all the fear and anxiety. I get the irrational what-ifs out of the way to do my research and concentrate on making the best possible decision.
Second, I accept that there is no perfect outcome to this. The closest I can get to the best resolution is to believe that what I'm working towards is how things are meant to unfold.
Third, I write it all down. Everything I want to ask goes into my little notebook. And every answer I get is written down as well. I review my notes before my next appointment, and if something has changed - I want to know why. At no time do I ever feel like I am monopolizing their time because this is all about me and my treatment.
Being active in the decisions I make about my treatment keeps me empowered about my health. I'm fully invested in ensuring I do what's right for me.
Sometimes it means confronting scary details and staring reality straight in the face when asking questions, but I'm stronger for taking the time to learn the answers.
This or That
Are you having to make decisions about starting or changing your treatment regimen?
Have you ever been unhoused or insecurely housed?