What if God Was One of Us?
My journey to find the right doctor has been long, difficult, and frustrating. Before AIDS, I had viewed doctors quite simply: they were godlike beings who gave you pills that made you better. So in 1982 when I was told I might have AIDS, I was surprised that my "infallible" doctors didn't know what to do or even exactly what it was. In hindsight, this was a blessing in disguise -- it forced me to re-evaluate my relationship with doctors. Suddenly I was on my own. When told there was no treatment, I said, "Thank you, I'll take care of it myself." I went to the health food store, began reading what little was available, and ate up every news story that mentioned AIDS.
As is common in HIV disease, nothing much happened for the first few years. It wasn't until I moved to New York in 1987 that I was forced to make some serious treatment decisions. The head of the Multicenter AIDS Cohort Study (MACS) -- an observational study I had joined in 1984 -- called to say that my CD4 count had dropped precipitously to 120. He recommended "the best AIDS guy" in New York, and I immediately made an appointment. After waiting weeks to see him, I arrived at the clinic to find that he was out of town and that I could only see an assistant. He proceeded to thump my abdomen and tell me there was only one clinical trial available (AZT) and that I didn't qualify for it. "Nothing else?" I asked. "Not here." "Any other trials elsewhere?" "I don't know of any." "Gee, thanks." I received a $200 bill the next week for this five minute chat, but when I called the payment department I scared the woman so badly that I never heard about the bill again!
So, I took a two-pronged approach: finding another "best doctor" in New York, and joining ACT UP to work with activists who were ferreting out all the clinical trials in the New York area. The latter step revealed a bunch of trials -- but none that I wanted to join. Joining ACT UP also led me to another doctor, who was a member. What could be better than a gay activist doctor? Now here was someone I could work with.
Our first visit started out well enough. He wanted to know everything about me -- did I have a doctor? (no) did I have a dentist? (no) did I have a boyfriend? (no) did I need a therapist? (no) -- lots of detail. That was good. Then he asked me to disrobe and lay on the exam table. He walked over, took a look, and said, "God, you've got a beautiful body." Nowadays, I would love to hear that (not from my doctor, of course), but back then it made me uncomfortable in a way that I didn't label as sexual harassment until years later. Imagine a straight male doctor saying that to a woman -- can you say "lawsuit?"
But I knew he was one of the few HIV experts in the city, so I ignored it and asked what he thought I should do. Unfortunately, by this point I knew about as much as he did about HIV treatment. AZT was only approved for people with CDC-defined AIDS and, besides, I wasn't sure it was that useful. So all he could offer were some referrals and advice to keep working out. Luckily, my CD4 count went back up to 300 and stayed there.
Nothing much happened until 1989, when AZT was approved for anyone with a CD4 count below 500. Even though I was still stable at 300, my activist doctor felt it was time to start AZT. I raised concerns about side effects and drug resistance. He insisted it was time to start. "Well, if I start, I would want to take 300mg a day, since that's the lowest dose that has been found effective in some studies." "I won't prescribe it at that dose." "Well, you can prescribe a higher dose, and I'll just take 300mg -- is that the kind of relationship you want?" The visit ended in a near-shouting match, and I was without a doctor once again.
For the next few years, I bounced from doctor to doctor. I relied on my annual visit to the MACS in Chicago for my blood work and ran to the clinic if I had some treatable infection. But all the doctors seemed to fall into two categories: dictators who demanded I do what they said, or scribes who were so impressed with my knowledge that they basically asked me what I wanted them to prescribe.
One prescribed Prozac when I was battling mild depression. I began taking it and was abruptly dumped by my new boyfriend when I had problems in bed. When I saw the doc, he asked if I had any side effects. "No, I don't think so. But I have been having difficulty getting an erection." "Oh, that's a common side effect of Prozac." "And you didn't warn me?!" "Well, I didn't want to increase your anxiety level." No, he just wanted me to lose my boyfriend, I guess. Funny -- since I was on Prozac, the breakup didn't really bother me. Still, it taught me to check into every drug I'm prescribed before I start taking it.
In 1994, I thought I found the kind of doctor I wanted: a freethinker who was happy to debate various approaches with me and was comfortable when we disagreed. But he was a GI doc (gastroenterologist) who wasn't really interested in providing primary care, and when I began developing significant neurologic symptoms, he was too busy to see me. I was forced to pick a doc out of my insurance company's book of providers -- a classically arrogant doctor who called for lots of GI tests but didn't bother to check into the numbness in my arms and legs.
After weeks of not being taken seriously, I awoke one morning and found I couldn't walk downstairs without holding onto the handrail for dear life. I put the word out to my fellow activists that I needed a good doctor immediately. One of them came through, and I was in his doctor's office that day. I explained my symptoms and said, "I want you to imagine a big red neon sign above my head. It's flashing: DANGER! DANGER!" He said, "Would you like to go to the hospital?" Thank god -- someone who understood that no one knows better than the patient when something is really wrong with their body.
Two days later, I was diagnosed with advanced neurosyphilis. Granted, I presented with an unusual set of symptoms, but I did have symptoms, goddammit, and someone should have taken them seriously. I eagerly began my first infusion of penicillin and went to sleep to allow the healing to begin. Suddenly at 2 am I awoke with chills and the shakes. The shakes became so violent that I could barely stay in bed. I rang for the nurse. "I think I may be having an allergic reaction to the penicillin! Call my doctor!" She wouldn't wake him, so an intern came in and frantically began doing all kinds of tests -- a chest X-ray right there in my bed, arterial blood gases, the works -- all while I was shaking frantically.
Everything came back negative, and the shaking eventually stopped. When my doctor came in at 7 am, he said, "How are you?" No one had told him anything about the previous night's chaos. When I did, he said, "Oh, that was just a Herxheimer reaction" Just? What the hell was that? "It's a classic response to an antibiotic when many infected cells are being killed off." Three different doctors had seen me just before I began the penicillin and not one of them had bothered to tell me about this relatively common reaction. "You should be happy -- that means the penicillin is working." I would have been happier if someone had had the courtesy to warn me ahead of time.
But this experience just reminded me of what I've seen time and again over the last 22 years. Doctors aren't gods. Like the Joan Osbourne song says, "What if God was one of us? Just a slob like one of us?" I guess they are -- just looking for the answers like we are. And the sooner we realize that, the sooner we can all work together to find the path to a long, healthy life.
Mark Milano is a longtime AIDS treatment activist and a treatment educator at ACRIA.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.