Tommy, a 25-year-old gay man, also told his physician he’s not ready to begin HIV medications. “Once you start, it’s for life,” he says. “What are the meds going to do to me over time? That scares me. And that pill is like a daily reminder of what might happen.”
“My doctor wants me to start on the meds right away. I’m not sure I’m ready to take that step,” says Julie*, a transgender woman who learned she was HIV-positive a few months ago. I hear this often from my clients, and for a lot of different reasons. Julie's physician strongly recommended that she begin treatment as soon as possible. She’s resisting for several reasons.
“In the first place, I’ve heard the meds can really interfere with my hormones. I don’t need that problem. And second, I’m already dealing with enough stigma without adding that to the list. So I’ll pass for now.”
There’s no denying that beginning treatment will require making changes. Scheduling when you take the medication will affect your daily routine. The pills add new responsibilities for monitoring yourself, watching for symptoms, and waiting for test results. They also mean regular contact with your health care provider and thinking about HIV more than you may feel you want to. Overall, treatment means taking better care of yourself, and that may involve some pretty big adjustments to the way you live. It can also save your life, so determining why you resist is something to consider.
With change comes uncertainty. Uncertainty can be scary. Has the prospect of starting treatment caused your fear factor to kick in? If so, here’s what you can do:
Figure Out What Really Scares You.
What’s holding you back about starting treatment? How your body might react to the medication? How it might interact with other medications or treatments? Stigma? Having that daily reminder that you are HIV-positive? The starting place for facing the fear factor is to define exactly what it is that’s holding you back.
Consider the Source.
Keep in mind that your concerns about HIV meds may be the result of talking to one or two people who had bad experiences, weren’t compliant with their regimen, or have information that’s incorrect or out of date. Plenty of scary stories are about side effects that no longer occur with more modern medications. So keep in mind that your fears about starting on HIV meds may be based on misinformation.
Flood the Fear With Facts.
Without real information, our minds have a way of filling in the gaps with stories and what-ifs. And too often, our minds can take us to a pretty dark place. So once you’ve put a face on that roadblock to starting treatment, it’s time to get informed. The Internet is a good starting place, but stick with the websites of HIV organizations that you trust and U.S. government health sites like AIDS.gov. Take notes. Make a list of questions. Sure, you may not hear everything you want to hear, but let’s face it, those stories you’re creating may also be creating more stress. And look at it this way: If you know what you need to be concerned about—and don’t need to be concerned about—then you and your doctor are in a better place to know what to do.
Have a Sit-Down With Your Health Care Provider.
No matter how much you believe in the Internet, do not skip this step. Bring your questions to the practitioner you’re working with. Go through the list and get answers. Let him or her know anything you learned online that worried you or that you didn’t understand. This is your health, so don’t worry about being high-maintenance. While you’re at it, find out how your provider would monitor how you’re doing with the medications if and when you get started. What will he or she look for? What should you be paying attention to? What are your alternatives if things aren’t going as well as they should be? While you’re at it, talk about the risks of not receiving treatment.
Medical diagnoses and treatment bring up a lot of emotions that can make you feel all over the place. All too often, my clients tell me they don’t have any emotional support and that the only people they talk about HIV with are their doctor and me. One of the best ways to cope with fear is to get emotional support. Is there a friend or family member who can listen without judging you, telling you what to do, or telling you stories that just add to any concerns you might have? Just having someplace to talk can give you a whole new perspective. What about a local HIV organization or LGBT center? An online support group? You might also consider talking to a mental health professional to help you decide on the way forward. Support is power!
Take a Step Back.
The fear factor can leave you feeling like you’ve lost your way. When that happens, it’s a whole lot harder to make decisions. How about taking a step back and paying attention to your emotional and spiritual self-care? Do something active to release some of that stress. Do things you enjoy with people you enjoy being with. Take some time out to feel calm and relaxed. Stay involved and connected with your life. Go easy on yourself.
Here’s the Bottom Line.
HIV treatment has come a long way over the past few years. Research has shown that going on the meds sooner and staying compliant gives you the best chance to stay on top of the virus, live a long and healthy life, and not pass it on to another person. If you talk to enough people who are HIV-positive and doing everything they need to do to maintain their health, this is what they will also tell you. Yes, this is your decision to make. But not making a decision is still making a decision: The virus doesn’t put its feet up and relax while you put off starting your treatment. It’s still there, and it’s still damaging your immune system. That’s why you should get informed, connect with your health care provider, find support, and take the next step in taking the best possible care of yourself.
*Name changed for privacy
Gary McClain, Ph.D., is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habitsand Empowering Your Life With Joy.