Have you ever been given a death sentence? To say that it's life altering is an understatement. We all expect to die someday but when you have an expiration date hanging over your head you now have a completely new expectation of death, because now it's more imminent. Suddenly you have an expiration period to anxiously wait out, and the tick of the clock takes on a whole new meaning, believe you me.
I was diagnosed with AIDS in June of 2000, I had a CD4 count of 42 and my viral load was about 800,000 (an AIDS diagnosis is when the CD4 count drops below 200). I had PCP pneumonia (an opportunistic illness caused by HIV and a devastated immune system). I was by all accounts dying and told to get my affairs in order. I was stabilized and prescribed medication, and then sent home to await the inevitable (at least that's how it went in my mind) and I truly believed that I was certainly dying too because I really felt in not just my body, but also in my heart and soul, like I was dying at that moment.
I honestly learned more about this disease from my advocacy colleagues than I did from my doctors at the time and I wanted to share it with others.
Even though I did get to feeling better with medication, I spent the next 15 years in a kind of purgatory waiting for death to come. I was taking my medicines, but I didn't know how effective they were, I just knew they had kept me alive so far. Living with death every single day is extremely stressful and traumatic, the fear of any and every little illness potentially devastating an already compromised immune system and ending my life was exhausting, but this was my daily reality for well over a decade.
I was ignorant and I shouldn't have been. I am now living with HIV (not AIDS, because taking medication gave me an undetectable viral load). AIDS is not a virus; it's a diagnosis of an immune system that has been devastated by an unmedicated and out of control HIV virus, but it can be brought under control with medication. But I was still uneducated about the virus that I was living with. It took at least ten years before I could catch a cold without freaking out. I knew that medicine had come a long way, I was still alive after all, but I was given a death sentence, and I thought my time was still quickly running out.
I shouldn't have been so uneducated, especially for so long, but I didn't find information easily available, nor honestly did I really look for a long time. I'm not very literate about technology or very resourceful, especially before 2016, when I got into advocacy. It was really a dark time for me in more ways than one. That's why I got into advocacy, because I didn't want anyone else to be as uneducated as I was – to be living in fear like I was. I honestly learned more about this disease from my advocacy colleagues than I did from my doctors at the time and I wanted to share it with others.
Whether short or long life is precious and should be lived fully
I don't want to make it sound like my doctors weren't doing their job to educate me. I guess they did, as much as they were able. To be honest I don't really know why I was so uneducated about the virus I was living with, maybe because I didn't have internet access for years, there was no public knowledge about U=U yet, even doctors were still slowly learning about the disease and the effectiveness of new treatments, so I don't remember anyone ever telling me for a long time that I could expect to live a long "normal" life, only that I wouldn't die from a cold.
Since becoming an advocate, I've learned a lot about this virus and if there's one thing I want you to know it's that you don't have to be afraid of death – don't live your life looking over your shoulder. Whether short or long life is precious and should be lived fully, tell your loved ones that they are loved, live your best life in your authentic truth, and help others to live their best life as well, but prioritize yourself. It's not selfish, it's self-care, and it's necessary for your wellbeing and others. You can't pour out into others from an empty cup as they say.
Living with HIV can be difficult, not because of your health, but because of the ignorance people still have about HIV. It's far more difficult to live with people's perceptions of HIV than with the reality. Honestly, I'd rather live with HIV than diabetes or COPD. HIV is a chronic condition that's actually pretty easy to live with in comparison, but most people don't know that. That's why you're needed to help fight against ignorance by sharing your own story and educating public ignorance from which stigma derives. If you only educate those close to you like family and friends, that's great, it's still progress; this is how change is made, one person at a time.
If you've been diagnosed with HIV and feel like you're in your own purgatory, know that you're not alone and there is lots of information available today that we didn't have in years past. Educate yourself about the disease, understand the current reality of the virus and its treatment, and know that you can expect to live a "normal" lifetime with adherence to treatment. And with all this knowledge at your fingertips, there's no more purgatory of waiting to die. Now the purgatory I live with is the ignorance of others, the purgatory of life with stigma, but that's another matter.
