Remember when you scoped out resources after your initial diagnosis? Becoming HIV-positive brought you on a personal investigation. There were questions and concerns surfacing, fears amplifying, and many decisions demanding action – all part of the discovery to make sense of the unknown that was happening. You and I were stepping into a life transition.
The resources I discovered at that time said much of the same thing and laid out my HIV journey in chronological, manageable steps: connect with an HIV clinic, get your blood tests every three months, eat well, sleep well, prepare for antiretroviral regime, get support, choose carefully who you tell about your status, access supports, and manage your health. Now, with lived experience, anyone living with HIV over a set span of years will find the “how to survive HIV” manual to be very basic, still relevant but missing some of the fine print.
There are things they never told me; subtle, profound occurrences that invaded my daily existence and provoked my coping mechanisms. A situation would pop up just when I was making sense of everything; the unexpected would occur and I would be experiencing instant embarrassment and frustration. I watched similar setbacks happening to my peers. Time and time again, they would be hit with hurdles and barriers within the healthcare system; shocking stories of stigma and discrimination from professionals who knew better but failed to respect the personal dignity of their patients.
Here are some of my disclosures, which for me, fill in some gaps in HIV 101 and highlight the nuances of a life I never expected to happen:
Dropping a friendship. I remember sharing my HIV status with a few close friends just after my diagnosis. One decided to tell me that if it happened to him, he would throw a party and end his life immediately after when he was alone. His fears were based on shame. His party plans would come up often in conversation, which affected me negatively. I was fighting for my life at the time, and wanted to live, and knew his companionship was not benefiting me in any way. The friendship dissolved because it had to. I knew better than to entertain his advice. I needed friends who would add and multiply me, not subtract and divide.
Loosing income. I was a self-employed artist with a successful career, lots of work, lots of art students with little time off. I was hit hard during seroconversion with the virus spiking at high levels and my CD4s falling to the dreaded 200 count. It took 3-4 months of rest at home to get my strength back, increase my food intake, regain weight loss, etc. That translated to little or no opportunity to make money. I fell behind on bills and my self-employment provided zero sick leave benefits. Family helped when they could but the fall out took a year of catching up.
Possibly a day without meds. I would call in my antiretroviral prescription days ahead to ensure no gaps in my regime. I was taking Sustiva and Truvada at the time, a triple therapy. Upon pick-up, I was told only one medication had arrived at the pharmacy and it may take a few days to acquire Sustiva. The young, uninformed pharmacist (it was 2009) was prepared to sell me half of my order and ask me to come back in a few days. I educated him on the necessity of having both at the same time and asked if he would find another pharmacy that may have a bottle of Sustiva on reserve stock. Two hours later, I had my full prescription. On other days, pill time would be on schedule but for the life of me, I couldn’t remember if I just took one or needed to take one. I retraced my steps looking at a coverless pill container and dumbfounded about why I was even questioning if I did or not. I need not say more about possible disillusions on Sustiva.
Blood work mishap. I have great veins which I am grateful for. I have heard horror stories from folks undergoing blood tests to come up unsuccessful, and bruises to boot. My issue was fasting and timing. On one occasion, I was called to repeat a blood requisition due to my vials missing in action. So I had to fast again and make a second trip into the lab. How does that happen? And the greater travesty was wondering if my blood was possibly miss-assigned to someone else’s results. Unlikely?
Not everyone gets it. The acquired skill of hiding the details of your HIV life from others is exhausting. The imposed silence from a family member can clearly demonstrate awkward, uncomfortable feelings around having an open discussion. They may forget to ask on occasion how you are doing, even though they heard through the family grapevine that you had a setback. You get used to it but try your best to not rock the boat. My recent writing has bridged some of the distance and stimulated more openness with the people I love.
The pressure to be Superman. Saving the day was a common itinerary; balancing work, doctor’s appointments, family responsibilities, pill side effects. Finding time to prepare a healthy meal was certainly a triumphant achievement! I also worked as a caseworker at an ASO with 75 clients on my caseload…and there were many opportunities to save their day as well. I wonder if Superman experienced compassion fatigue. Things pile up and you don’t want to be found at the bottom of the heap.
The HIV sector is not always friendly. Ouch! I said it out loud. Like any groups rallying around a cause, therein you will find alliances, political and personal agendas, and blatant hypocrisy. Nothing new for a not-for-profit experience. In 10 years, I have seen it all, and at the end of the day what matters most is my health and well being, not whose side I’m on or if my support is sanctioned or deemed valid. I am way more than an epidemiologic statistic.
The disclosures mentioned above are few of many but they happened, and continue to happen to others on this journey. There’s nothing cookie-cutter about it. Life follows its own rhythm, and disease, sickness and illness impact people in personal, individual ways.
If I were to write a HIV+ life manual, it would include what is common among us all, HIV 101, but a whole lot of pages would be left blank to make room for what’s next …those different kinds of disclosures unique to us all.