I once believed a conspiracy theory that nearly ended my life. This is my argument against banning them online. In 2011 I was sick, desperately, continuously, hopelessly sick. I had begun what was then a very lonely journey through HIV diagnosis and treatment and my future outlook was grim. Although I was promised an extended life with new medicines, I certainly could not imagine a decade or more of daily vomiting, endless migraine headaches and the omnipresent feeling that my body was falling apart. The medication I was taking was the newest and best available and my doctor, who could only see me for about 15 minutes at a time every other month, was certain it would improve my health and longevity. He had so many patients he could barely keep up with the workload and he was used to noncompliant and risk-taking behaviors. He warned me in our first meeting not to read books or go online and ‘fill my head’ with nonsense. I was to simply take the pill every day as instructed.
The side effects were immediate and overwhelming, and I found myself struggling to get through each day as I tried, with great determination, to stay positive and wait for them to subside. But they never did and continued getting worse. By my third appointment I was staring at my blurry reflection in the elevator door and I saw a grey, tired and very sick old man. My hair had begun to fall out and I lost a tooth. My skin itched and burned and my eyes were constantly watery and dull. I could barely focus for more than a few moments at a time from the ever-present stabbing pain in my head and the back of my neck. I gained weight and my face began to look hollow, wrinkled and grey. But my labs were good, and my doctor was distracted that day when I cautiously asked about the side effects. Without looking up he simply waved his hand at me and gruffly said, ‘This is life with HIV, you just need to get used to it.’
I was exploring my spiritual world and a good friend of mine was deeply into New Age philosophy and practice. He constantly complained that ‘Big Pharma’ was probably making me sick on purpose just to keep me on the drugs, which were several thousand dollars a month paid by federal funding. I was terrified all the time as the few instructions I had been given were to never miss a dose, even by an hour otherwise the virus could adapt and the medicine would be useless and without them I would have maybe a year or so to live. I worried about how I was going to pay for them if I got a better job and didn’t qualify for Medicaid. I constantly imagined the consequences of catching a cold or the flu or getting hurt in an accident and not being able to recover. I was obsessed with fear.
I worked the night shift at a hotel at the time and had a lot of profoundly miserable hours to sit and stare at my computer until my shift was over and one day while reading stories about other people living with HIV I came across an article written in 2009 titled, Debunking the “Beehive” of AIDS Denialism. The article discussed a longstanding alternative group who believe that AIDS is caused by two factors, in the gay male community it was overuse of drugs and a popular substance called ‘poppers’, an inhalant used in sexual practices linked to cancer and combine with that for heterosexuals it was the side effects of the HIV medicine itself. The belief is that all the physical manifestations the medical world understood to be ‘AIDS’ was actually the effects of powerful drugs on the body. The HIV virus simply does not exist and there was no evidence to support that it did.
The very first person to propose this theory was a scientist named Peter Duesberg who was one of the original scientists to study the condition. In 1995 he wrote a 600 page book titled, Infectious AIDS: Have We Been Misled?: The Fallacy of the HIV-AIDS Connection, in which he cited dozens of peer-reviewed scientific writings and studies to support his views along with his experience of being blacklisted from the scientific and medical communities for doing so. The second most prominent advocate for this theory was a woman named Christine Maggiore who founded an advocacy group named Alive & Well AIDS Alternative. The group was a support system to persuade HIV positive individuals to abandon HIV medications and return to a healthy state. She died of AIDS-related causes in 2008 at the age of 52. Furthermore, I found multiple documentaries interviewing physicians, scientists and even those directly involved with early AIDS research including the inventor of the machine that is commonly used to count a person’s viral load to see how well the medications were doing all fervently declaring HIV/AIDS to be a complete lie. My head was spinning, and I realized my experiences aligned perfectly with what they were saying. I found myself believing them.
With the encouragement of my friend, I took a deep breath, took one last look in the mirror and then flushed all of my pills down the toilet. I thought, ‘Worst-case, I’m wrong but maybe I won’t suffer every day until I die like I am now.’ I reasoned that I wasn’t sick before and I only became sick after taking the medications. Sure enough, the next morning I felt better than I had the day before and by the end of the week I had stopped vomiting and the migraines were gone. I had more energy than I remembered being capable of and my friend celebrated my courage for taking the risk. But there was one major catch, I had to keep it a secret. I knew no one would believe that HIV wasn’t real unless they delved into the research like I had, and I knew they would be extremely worried about me. I decided to lie to my doctor, pretend with my friends and keep the truth to myself.
My next, and last, visit to my doctor I was prepared with questions that I believed would validate what I had read. AIDS Denialism is extraordinarily detailed in their justification and analysis, breaking down the functioning of cells, the nature of viruses and the precise way HIV-related technology works. You feel as though you are highly informed on all aspects of the topic and advocates commonly advise the skeptical to ask their doctors specific questions. He asked me how I felt and when I told him I felt much better he said, ‘See? I knew you’d adjust to the medicine. You look better too!’ I began asking him about the nature of my HIV, which has a unique genetic code, if I could see images from the viral load machine and specific questions on how the medicine worked in inhibiting the virus. He raised an eyebrow and said ‘What did I tell you about reading things? Just take your medicine.’ I felt that was suspicious and it validated my growing certainty that the conspiracy was true.
I never went back and from previous visits knew that his rule was not to treat patients who were noncompliant. He mentioned this to a mutual physician I knew personally who aggressively challenged me and when I finally admitted I had stopped taking my medications began running down a litany of consequences ranging from blindness to cancer to AIDS and eventually death, likely within a year or less. But I didn’t listen, I knew she had been compromised by the medical world unwilling to be critical about the topic. Besides, I felt better than I had in a very long time, obviously something wasn’t adding up. I also shared my experience with my Jewish family and told them in a single breath the entirety of what I had found. Rather than scold me, they asked me for the evidence I had and patiently talked me through it. They continued patiently introducing new challenges and questions as time went on, but as I continued being perfectly healthy, I felt more and more validated.
Not only did I pass the ‘less than a year’ mark, I found myself three years out and doing fine, until one day I wasn’t. I woke up with a fever and a sharp pain in my side that was more intense than I thought possible. The pain escalated rapidly and within a day I was completely incapacitated. My friend rushed me to the ER where the doctor examined me and with a suspicious tone asked me if I was HIV+. I told him I was and he asked me if I was taking medication. When I told him no, he rolled his eyes and shook his head and with frustration announced that I had probably destroyed my immune system because I was in the early stages of Shingles and there was nothing he could do to help me. Clearly annoyed he discharged me with nothing but a recommendation to see a family doctor as soon as possible. For the next two weeks I suffered in excruciating pain, my body draped with blisters and a constant fever. My Jewish mother told me that our physician friend told her shingles was a warning side of impending AIDS development.
I was traumatized, suspicious and afraid. The doctors I had experienced to that point had all bullied me, treated me like an idiot or a drug addict and dismissed my concerns and I didn’t want to go through the suffering of the medication again. But with my Jewish family’s encouragement, I made an appointment with a new doctor an hour away and my Jewish mother and I went for an extended visit. There I talked with my new doctor for two hours going over every detail I had read about, and she patiently provided me with counter information that was compelling and rational. Without judgement she simply said, ‘Let’s just try this and see how it goes.’ My CD4 blood count, a measure of the immune system, was dangerously low and I was close to the 200 mark which indicates the condition AIDS. I had just made it in time to repair the damage.
It turns out that I was allergic to one of the drugs included in the formulation of the first round of medicines and after trying a different class, found very few side effects at all. With new information I was able to override my fear response and logically process what I read and saw with what I learned and I made the decision to pursue treatment. Today my immune system is almost normal and although I still have reoccurring shingles outbreaks, my HIV is managed and I am healthy. But it took a long journey to get here and I had people who loved me to help me. My experience is the exact consequence those who argue to ban conspiracy theories fear the most, what if someone really believes them and gets hurt or harms others.
But for me it was not so much that I was exposed to the conspiracy information itself but that I was denied access to persuasive information to counter it. I simply was not able to have a conversation about the topic in a rational way. The hostility, the anger, the accusation, the dismissal, being told I was stupid and deserved to be sick only made me cling more tightly to the conspiracy which promised that exact response from the ‘non-believers.’ It took patience and a respect for my intelligence to really allow me to see the full picture. Instead of trying to protect me from ever encountering the ‘dangerous’ information, if the people in the medical world had approached me with appreciation for my curiosity and allowed me to explore the research, I might not have waited so long to trust them again.
It is my view that as much information as possible should be available in order to show why a view is correct or incorrect. Rather than react to the possibility of harmful information by hiding it and shaming anyone who questions it, as a society we should advocate open discussion and debate. This is especially true in the medical world where too often the patient feels pushed out of the conversation in their own health and is expected to simply follow orders. Understanding why is always better than being afraid to ask. Whether the topic is immunizations or Flat Earth theories or political or religious challenges, the response should always be, ‘Show me what you have, and I’ll tell you what I know.’ Knowledge should be open and welcomed; not feared and hidden away for the safety of people believed incapable of knowing any better.