Why You Should Take Control of Your HIV Treatment From Day One

Angie described herself as in a “state of shock” when her physician gave her the news that she was HIV positive. While she hadn’t been feeling well for the last few days, she assumed she had the symptoms of an illness that would be hopefully easily treated. That she would be living with HIV for the rest of her life was the furthest thing from her mind.

Sure, her doctor told her that with the help of medication and taking good care of her health, she would be able to live a normal life. But her doctor’s description of what she would need to do to stay healthy felt overwhelming. Medication at the same time every day? Really?

Angie’s doctor gave her some printed information, along with the URLs of websites she thought Angie might benefit from. But by that point, Angie wasn’t able to take in anything else. 

At some point in the discussion, Angie’s physician said: “Angie, I’m going to do some additional testing to decide what regimen to recommend. We have a few options. I want to go through each of the options with you, the pros and cons, and what this will mean for you in terms of your responsibilities.”

Your First Instinct May Not Be What’s Best For You

Before her physician could begin discussing the options, Angie held her hand up. “I totally trust you. Please just choose the option that you think is best and tell me what I need to do. I want to take my HIV medication like it was a daily vitamin. I don’t want to be involved beyond that.” 

Angie told herself that by asking her physician to make this decision, she was showing that she respected and trusted her physician’s judgment. While that might indeed be true, Angie’s reaction also had a potential downside.

By refusing to engage with her doctor, Angie was also missing out on the option to have a voice in her destiny. More important, Angie was rejecting the opportunity to be an equal partner with her physician in her treatment. In choosing this more passive role, Angie was disempowering herself. She had given in to the fear factor. 

Angie’s decision to leave treatment in her physician’s hands also made her doctor’s role more difficult. She would have to take an educated guess at how to recommend Angie take care of her health, with the possibility that Angie would find her recommendations too difficult to follow, leaving her health at risk. And if Angie was already this unwilling to take an active role in her healthcare, would she also not keep her doctor informed along the way? 

Here’s what Angie’s doctor said to her: “Angie, I appreciate your trust. But what would really help is for you to team up with me so that we can work together in managing your HIV. Let’s talk about how we can make that happen.” 

What about you?

If you have been recently diagnosed, you might also remember having had some initial resistance to getting involved in your treatment. This might have changed over time, as you worked through your emotional reaction to your diagnosis. Or you might still be feeling like you would rather let your doctor make all the important decisions. 

And if you have been living with HIV for a period of time, you still may have those moments when you just want to let your physician take charge. Like when you need to make a change to your regimen. 

Either way, here are some ideas to consider: First, let go of self-judgment. When Angie’s doctor brought up her concerns about Angie’s lack of involvement, Angie initially felt ashamed. She felt like her doctor was calling her out. “I guess my doctor thinks I’m a wimp,” she said to herself. But that wasn’t her doctor’s intention, not at all. It’s only human to feel overwhelmed when you learn you’re HIV positive. And it’s only human to want someone more knowledgeable to step in and make things better. You’re dealing with a lot. Show yourself some compassion by turning off that voice of criticism. 

Don’t underestimate the role of your emotions. News of an HIV diagnosis brings up all kinds of emotions. Most likely, initial shock, followed by feelings like fear, anger, and sadness. When you’re overwhelmed by feelings, it’s hard to consider any information that might be presented to you, and pretty much impossible to make decisions. Again, if your emotions have made it hard to discuss treatment options, you’re normal. 

Give yourself time to adjust to your diagnosis. Emotions will come and go. What’s important is to allow yourself to feel how you feel, and to talk about how you feel. That’s how you’ll come to the place of being able to look at the facts around your diagnosis, and participate more fully in your own treatment. In other words, be patient with yourself. You’re doing the best you can during a difficult time in your life. 

Get educated, but at your own pace. Learning about your HIV may feel like the last thing you want to do. It’s a lot of information to try to digest and make sense of. And much of the information you encounter can be scary. So take your time. You might want to begin with the resources that your doctor provides you with or suggests and then branch out from there. Step by step. I always recommend to my clients that they flood the fear with facts. The more you know about what you’re dealing with, the more you competent and confident you’ll feel. Why? Because you’ll know what you need to do to take the best possible care of yourself. Knowledge is power. 

Build a relationship with your doctor. Angie’s doctor asked her to team up with her. Her intention was to present an opportunity to Angie, not to criticize her. Once Angie realized this, she was also able to take steps on her end to become an effective team member. Angie not only did her research. She asked questions. And she made suggestions. This is the essence of teaming up with your doctor. As the saying goes, two heads are better than one. 

Consider your treatment a work in progress. While you make initially want to leave the treatment decisions to your physician, you may very well want to get more involved over time. You may find that the initial treatment regimen is not as effective as you and your doctor need it to be, or that it causes you discomfort, or interferes too much with your day-to-day routine. You may also find some other options in your own research. Most likely, your treatment regimen can be revised over time to better fit with your own uniqueness. Having an ongoing dialogue with your doctor will help to assure that your treatment evolves to be a stronger fit for you. 

Embrace the value of being your own advocate. When you appoint yourself an active participant in your healthcare, you essentially announce to the world that you are facing life on life’s terms. That you are willing and able to do what it takes to manage your HIV. In an active, not a passive, role. The result is a sense of optimism, and mastery. Along with a boost to your emotional wellness which, in turn, can also benefit your physical wellness. This is a cycle you want to get started in your life. And most likely, your doctor wants you to as well. 

You and your doctor. Just treat me? No, that’s not good enough for you. Be patient with yourself. At your own pace, take steps toward teaming up with your doctor. Get active. After all, it’s your health. 

Gary McClain, PhD, is a therapist, patient advocate, and author in New York City, who specializes in working with individuals diagnosed with chronic and catastrophic medical conditions, their caregivers, and professionals. He maintains a website, www.JustGotDiagnosed.com.