Why I Shouldn't Be Afraid to Call My Doctor Back

The first time I heard the term AFRAIDS was several years before I tested positive for HIV. A friend said it was a new disease killing people. It made people avoid going to the doctor for anything but the most serious of conditions, afraid that something as innocuous as a cold would turn out to be something far deadlier.

I knew of several people who had disappeared after going to the emergency room with a sinus infection or a headache that would not go away. I understood and shared their fear of learning a terrible truth.

Surviving HIV and the fear of the unknown

I avoided doctors for years until a life-threatening fever pushed me into an emergency room. Despite what they told me, I refused to be tested for HIV. In the years that followed, I developed Kaposi's Sarcoma, a deadly and disfiguring skin cancer that was killing people daily.

I had seen the lesions on the bodies of so many young men - when they appeared on my legs, I knew what they were. I also knew at the time that nothing could be done about it. That was the same reason I refused to be tested; there were no good options for survival.

But after my HIV test and the biopsy of a lesion on my arm, something changed. Knowing what I was facing took the fear of the unknown and turned it into a desire to beat the virus. Knowledge gave me the willpower to fight back despite the overwhelming odds.

I collaborated with my doctor to develop a treatment plan. I read diligently about drugs that were showing promise and followed clinical trials. Luckily, since the introduction of protease inhibitors and highly active antiretroviral therapy (HAART), the cancer has gone into remission.

Now, after years of enjoying life with an undetectable viral load and the lack of opportunistic infections that it brings, cancer has visited me once more. This time, it's HPV related. I reacted much faster this time, but the diagnosis crushed me. I felt as though I had failed.

A diagnosis is not a defeat

Catching it early by paying attention to my body and keeping up with my regular doctor's appointments allowed me to start treatment quickly. But something felt different this time. I wasn't as present as I had been when making treatment decisions. I just wanted someone else to make them for me.

Every time the phone rang, I feared it was my oncologist. What had the tests found out now? I knew I needed the answers, but I felt more bad news would come my way at any minute. I was depressed, and I had to find a way to get myself back in the game.

Reminding myself of what I fear most

First, I reminded myself that being afraid is a natural reaction. But I could not live in fear forever. I wrote these words on paper and put them in the mirror in my bathroom to review them daily.

I reminded myself of my battles and what I have been through. I had to say, "Robert, you fear the unknown the most, and the only way to beat that back is to seek out the answers."

But my head can spin into infinite what-ifs if I'm not careful. There's a difference between planning for possibilities and letting your imagination get the best of you. I stay in the moment by asking myself, "Is this a real issue I need to plan for? Or am I worrying about something imagined?"

Worrying about things my mind makes up keeps me from enjoying the moments I am in. Life has shown me over and over through the years that those moments are all we have, and to live them, you have to be present.

Remembering I am part of a community

I also had to remind myself that I'm not alone. There are people close to me and others I only know online who I can lean on when the going gets tough. And if they seem to be struggling with the information I'm sharing, I forgive them for not having the strength to face what I can barely do.

What matters is that I connect with others who are going through or have been through what I am experiencing. During the visits with my radiologist, I reached out to the other people sitting quietly in the waiting room before their therapy. Ultimately, I made several amazing friends I can call on when feeling overwhelmed.

But first, I had to know what I was dealing with. That is why I called my doctor back because I know it is not the answer I should be afraid of. It is not knowing that can hurt me the worst.