What My Doctor Didn't Know and Didn't Ask
Not too long ago, I met my new doctor. As he went over my lab numbers he immediately started discussing medication. I stopped him and proposed waiting until I had permanent housing. Reluctantly, he agreed and we decided to meet again in a month. It seemed we were off to a good doctor/patient relationship.
After a month of ambivalence and stress, it was time for my follow-up visit. That morning I awoke feeling weak and tired. I could barely muster enough energy to make it to the clinic. I thought about canceling, but I knew that I had to "show up for life."
I came to the appointment apprehensive about taking medication. My fears were running rapid. I was afraid of the unknown and of the side effects that might occur as a result of the drugs. The doctor looked at his computer screen, read off my numbers and a list of drugs. It felt like I wasn't in the room. But, Doctor, I have questions.
I was seeking reassurance and empathy, but what I received was impatience and intolerance. I came seeking answers to my questions, so my ignorance and fears would not hinder what I knew was necessary treatment. I was seeking a doctor who would listen to me. But as it became clear we were quickly heading in two different directions, my doctor suddenly and abruptly said, "Goodbye," and walked out of the room.
I sat there in disbelief. He was supposed to schedule me to see the adherence counselor, which I requested. He was supposed to write a prescription for multi-vitamins, which I suggested. Had he listened, he would have realized I had some immediate issues that needed attention.
Instead he felt challenged by my hesitation and became frustrated. I was supposed to be the good patient, who arrives, receives his recommendations, agrees to everything and lets him move on to the next case, delivering the same impersonal medical jargon.
Well, how could he successfully treat me if he doesn't know me or take the time to understand my fears and my day-to-day struggles? If you don't listen to me, I can't actually believe that you care about me and my health. For him, all the answers were on his computer screen. So, I left feeling physically and emotionally drained. Now, my fears were really heightened and validated. Still, I knew that I would have to begin treatment, soon. My recent history in Atlanta convinced me the time had come.
* * *
My health deteriorated. Before this awful year, I had never had an opportunistic infection; I had hardly been sick at all. First, I came down with shingles (a disorder in which a rash of small blisters develops on the skin, caused by varicella-zoster virus, the same virus that causes chicken pox. The rash of blisters, usually confined to one side of the body, erupts when dormant virus particles reproduce in the nerves supplying the skin). I looked horrible. My left eye was almost completely shut and I had blisters all over that side of my face. The slightest pressure caused my head to begin burning. The pain would be so great, I would fall to the ground in excruciating pain as my spine and neck tensed up.
To make matters worse, I had no insurance and no moral or emotional support. For several weeks I had to walk a mile to receive medical attention with my eye and the left side of my face covered to hide the lesions. For treatment, I was given pain pills and sleeping pills. Yet I could not rest and recover at the shelter where I was staying. They could only offer me a hard chair in the waiting room, since their policy did not allow the comfort of bed rest during the day.
A couple of weeks later, I came down with my second opportunistic infection. While enduring the hot and humid weather of Atlanta, I became dehydrated. In seeking air conditioning, I somehow came down with pneumonia. I walked around for days dehydrated and feverish; my body felt like a wilting piece of lettuce. I thought my HIV had finally caught up with me. I thought I was going to die in that shelter. At the worst point, I could feel myself passing out, but then my will to live kicked in as I began to pray to my higher power, and through God's grace, I made it through the evening. The next day I was off to the hospital.
I was immediately admitted to the emergency room. I was terrified as I was put in isolation, feeling like a leper. I couldn't believe my fate. One moment I was a healthy, muscular jock and now I was this sickly individual lying in a hospital bed with HIV. I could no longer escape the fact that I contracted a disease that could kill me, especially without medication. I knew then that I had put off what I could no longer ignore. It was time. So, I immediately made plans to leave Atlanta and head to New York, where I felt I had a fighting chance.
When I arrived in New York I was directed to the clinic I now attend. There was a delay at first; I left so suddenly I didn't have my CD4 and viral load numbers with me, and so we had to wait for them to arrive. But when I saw my recent blood work, I felt the same inescapable conclusion; it was time to begin treatment. And that's how I ended up in an exam room with the doctor peering into his computer screen and telling me to take three pills during the day and two during the night.
So, why am I so apprehensive about beginning my regimen? Well, it's a life-changing, disciplined practice I must follow for the rest of my days. And if I don't get it right or fall off or stop, then I will lessen my chances of survival. This is scary for me; ultimately, I realize I have no choice. It's treatment or death. Its nausea and morning sickness or death. Its tingly and numb sensations in my foot or death. It's taking medication regularly and at the scheduled time or death. Though, there are so many choices and treatments today, ultimately I have only one. My CD4 count is below 300 and my viral load count has climbed from 150,000 to over 500,000. It's time.
But now that I have decided to begin treatment, I need for my doctor to realize that I'm not overwhelmed with joy and anticipation. I don't hunger to be reminded of my HIV status on a daily basis, no matter how many or how few pills I have to take. One is way too many.
So, here we are: me and my new doctor; my ambivalence and his indifference. I don't want to be ignored and taken for granted again just as I'm sure he wants a compliant patient who is ready to further his life expectancy and improve his health. How can we meet each other halfway or get on the same page? I suggest we talk. I have to believe that good treatment must begin with knowledge of your patient. Not his physical health history only, but also his emotional state. This lets your patient know that you care and that you respect his will to live, and not simply his benefit/insurance card that helps supplement your income.
So, trust is necessary for a good doctor/patient relationship, along with honest and open communication, as well as education about the different treatments and medicines available. So, on my next appointment, after seeing the resident adherence counselor, I will hopefully be ready to begin my lifetime/lifesaving regimen. But, will my doctor ask me anything personal? Will he ask me how I'm feeling today? Will he begin to take the time to know me? Will he realize my life may lie in his judgment?
Or will he ask me nothing; make his pronouncements, then abruptly leave the room with a cold and final, "Goodbye." Will he even realize his empathy and emotional support may be the medicine I really need? I have come so far and I know that I still have a long way to go. I just wonder if this doctor will make the time to take this journey with me. But, if he can't, I will find one who will.
This article was provided by Gay Men's Health Crisis. It is a part of the publication GMHC Treatment Issues. Visit GMHC's website to find out more about their activities, publications and services.