I’m Afraid of HIV. What Can I Do About It?

 I’m kind of embarrassed to say that I am walking around with a lot of fear. I got diagnosed about four years ago, so it’s not like HIV is new to me. My medication is working fine. I’m undetectable. I have a job, a boyfriend, a life. So why the fear? 

Gary McClain: “I’m afraid.” Two small words with a really big meaning, right? Words that we are often hesitant to say. Or more to the point: Afraid to say. 

It seems to me that we humans are afraid of fear. Afraid that we can become so overwhelmed by fear that we become immobilized by it. Stuck.  

But I think that’s not the only reason we are afraid of fear. We are afraid to admit how afraid we are because, if we do, we may think this will make it more likely that whatever we are afraid of will actually happen, that fearful thoughts will somehow invite the bad thing into our life. That’s called superstitious thinking. It’s another version of “don’t think about it and it will go away.” Yes, denial.

And I think we are afraid to admit to having fear because that would mean not having a “positive attitude.” How many times have you been told by others to stay positive, or told yourself that? And as a result have you called the positive thinking police on yourself and denied your feelings? 

So often, my clients will say something to me like “I shouldn’t be afraid.” Or “I can’t let anyone know I’m afraid.” Here’s my response: “When something scares us, we feel afraid.” I say that because fear is a normal human emotion. 

I am going to quote Dumbledore from the Harry Potter books. He said it best: “Fear of a name increases fear of the thing itself.” I would argue that when you’re afraid of being afraid, you set up a conflict within yourself: You against your own feelings. And the more you deny feelings, the more power you give them. 

Does that mean I think it is a good thing to be so overwhelmed by fear that you are unable to make a decision or otherwise take care of yourself? Of course not. 

Let’s face it. HIV can bring up lots of fears, from the moment you receive your diagnosis, to beginning and maintaining your treatment regimen, to contemplating the road ahead. These fears all fall under the umbrella of the biggest fear of all. Uncertainty. Humans don’t do very well with uncertainty. We’re wired to be in charge. Chronic conditions like HIV teach us that we don’t have all the control. 

And that’s scary. No denying that, right? So what do you do about that fear factor? Here’s what: 

Let yourself feel the fear. It’s one of a whole range of emotions that presents themselves when you are first diagnosed and keep popping up along the road ahead.  

Don’t let fear be an elephant in the room. Talk about your fear with your loved ones. And while you’re at it, let them talk, too. Get and give support.  

Let your fear empower you. Fear can be motivator to take good care of yourself, to stay compliant, to work closely with your health care providers. 

Flood your fear with facts. When you have a gap in your information, your mind has a way of creating stories to fill in the gap. Usually the worst possible scenario. So stay informed. Know exactly what you’re dealing with. 

Listen to your fear. Imagine that fear is standing outside your door. It keeps ringing the bell. Then it sends you a text. Followed by an email. You’re staying up day and night, trying to keep it away. Finally, you throw up your hands and say, “Okay fear, come on in. Let’s talk this out.”  You might be surprised to find that it’s a relief to stop hiding from your fear and see what you can learn from it.

Think of fear as a messenger. And identify the message. Stay compliant? Make educated decisions? Be grateful? Stop trying to be in control? Do some planning for the future? Think of that message is a little gift your fear brings to you, if you’ll only stop pretending it’s not there and give it some attention. 

You and your fear. Yup, it’s normal. So let it in. Take it for a walk. Listen for the message. Use your fear to empower you to take the best possible care of yourself.  

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. Find him online at JustGotDiagnosed.com.