By Kelly Gluckman
June 27th is National HIV Testing day; a day meant to remind people of the importance of getting tested for HIV regularly. Routine HIV testing protects you, and it protects others. For many of us who are living with HIV, National HIV Testing Day can be a reminder of first being diagnosed. It would make sense to think that because I’m such an advocate for starting medication as soon as possible after an HIV diagnosis, that I started medication right away. But the truth is, I didn’t. It took me nine months after diagnosis to feel comfortable enough to go on HIV meds.
When I was first diagnosed, I was extremely suspicious of the pharmaceutical companies and the medical field at large. I hated even just taking Advil for pain, let alone a cocktail of medication for an HIV infection. I believed that the medical and pharmaceutical industries were only operating in their best interest. Their goal is to keep us (the public) just sick enough to keep needing their products and just well enough to continue working a job to pay for them or be insured enough to have them paid for, I thought.
Everything I was reading about HIV medications was scary. The short and long term side effects sounded awful, and I learned that once I start taking them, that I can never stop. If you stop taking your medications, the virus can mutate and become resistant to that particular med, and that’s terrible for long term health and healthcare options. I was also scared of the financial burden.
I researched everything I could to give myself a reason not to go on ART (antiretroviral therapy). I tried to find reputable scientific support behind nutrition and holistic ways of treating the virus and found that there is none. I read up on the antimicrobial effects of coconut oil, which still won’t treat HIV effectively. I also read about numerous other “treatments” and “cures” that have unfortunately ended in tragedy for many people. When I said I researched everything I could, I meant it. I learned about long term non-progessers and elite controllers, who are people whose immune system keeps the virus under control so well that they don’t need to be on medication, and I prayed that I was one of them. Three blood tests to track the virus and its effect on my immune system said I wasn’t. Tests these days can see exactly how much of the virus is in your blood, and over the course of three months, my HIV tripled in number. That scared me worse than any side effect could, so I caved in and started taking medication.
I was delighted to find out that current treatments don’t have many side effects. In fact, I haven’t experienced any. I learned that because of the activism and advocacy of those before me, there are government programs and subsidies for help with care and medications. My HIV care is affordable and surprisingly convenient. I take one pill a day every day with a meal, and the virus has been rendered undetectable in my blood stream, which means that I am highly unlikely, and arguably completely unable to pass the virus to another person. For this reason, ART is a huge asset for public health. Now, after over five years of living with HIV at the age of 29, I’m healthier than I’ve ever been.
It’s important to note that the reason why I was able to go through a journey to become comfortable in taking medication is that I was vigilant about getting tested and tracking my health. I caught the virus at the very beginning of my infection, and I ended up starting medications soon enough after my initial infection to not have implications on my long term health and wellbeing.
Many people go years and years without getting tested, and unfortunately, end up in the ER with symptoms of AIDS when it’s too late. At that point, it’s extremely difficult to rehabilitate health, and the virus’ damage has done long-term harm. If a person is in good hands and lucky enough to be rehabilitated from this state, they usually have to take more and stronger medications for the rest of their life. These medications are the ones with awful side effects and higher price tags.
One of the biggest reasons why people don’t get tested is because they think that HIV is a death sentence, and they don’t want to know that they are going to die. I am living proof that this is untrue. If you avoid being tested and knowing the truth for years, you are gambling with your life. Another huge reason why people don’t get tested is because of the stigma that comes with living with this. I tell my story as often as possible to show that not only can you live with HIV, but you can thrive, and you don’t have to become a stereotype or a statistic. It is up to you to take charge of your health, so get tested regularly for HIV and other STI’s. Your older self with thank you, I promise.