Breaking the Silence on My Struggle With HIV Meds
It has been over a year since I have written a blog. Why should I? What allows me to sit here and continue writing about life with HIV when I face so many struggles every day? No one wants to hear about my crap, right? Everyone wants to hear me tell my peers to take their meds and be safe right? How can I tell anyone to take meds and to take care of themselves when I have been struggling with it myself? Who am I to tell someone to be med compliant when I have built a resistance against Atripla because of my own foolishness?
As I sit here in my living room staring at these bottles of pills on the table It hit me. This is exactly what my peers need to hear. THE TRUTH. How can I blog about RAW TALK when I am too worried about "what I should be saying", instead of just saying exactly what should be said, THE TRUTH!
I am all for the "This is no longer a death sentence" campaign, but I think some of my peers need to hear the other side of this as well. HIV is not a death sentence, but that applies to those who take care of their bodies and take their medicine as prescribed. At 21 years old I didn't have to care about my health. I could eat what I wanted, go without sleep for as long as I could handle, not exercise, no prostate exams or checks for anal cancers, and I could continue this lifestyle for years. My health wasn't important until I got old, right? So at 21 years old how am I supposed to go from such carefree behavior to being told that I'm to take these pills EVERY DAY FOR THE REST OF MY LIFE!
But I was ready. I have people to please, people that follow what I am saying so I have to be ready to set the example. So I started the medicine. At first it was OK. I was able to take them every day without thinking about it. Most days I forgot I even had HIV until it was time for me to take those pills. Then those days started to become more frequent. Then I started to resent those pills. For me those pills were a constant reminder that I AM LIVING WITH HIV.
Every night I began to replay the day I slept with my ex, him lying to me about being positive, the fact that I infected someone else, the thoughts that I may one day die from whatever opportunistic infection takes over my body. FUCK THESE PILLS! I would rather not take them and forget that I even had this than to go every night facing my mistake.
This was my way of thinking for a while. I was asked to speak in Chicago on life with HIV and when I was done I sat down with a few counselors and began to confide in them. I told them my struggle with taking my medication. The reaction was unexpected. I was talked down to like a huge hypocrite, and given the "You know better" speech. But one counselor in the group didn't do that. She actually broke it down for me in a way that made me feel like she understood. She told me that HIV is invisible to my eyes, but the pills are something I can see. Even though the pills are here to help me I still resent them. This is because instead of looking at the pills as a means of help I have turned the pills into HIV and that's why I won't take them. This made so much sense to me, but it only helped temporarily.
I went off the meds again. Constantly moving, chasing money to care for my children, picking up jobs where I could provide HIV education. Each time I would move I would leave my kids with my mother who lived right across the street from the school. I didn't want to bring so much instability into their lives.
While doing an assignment in Baltimore, Md., I stayed with a friend who was also HIV positive. We would remind each other to take our medicine so this helped me stay on track. My friend was evicted from his home and that left me sleeping in my car. I moved in with an associate who had no idea I was HIV positive. This was an awkward situation for me. I am very open with my HIV status but now I was living with this man who I had heard on many occasion express his fear of HIV positive people. I did not feel like this was a moment for me provide the education needed either. I wanted a place to live and that's what was at the front of my mind! So where would I hide my pills. My mother was mailing me prescriptions from Michigan at my previous address. For fear of them finding out I chose to come off my meds again.
In 2012 a friend of mine passed away from complications of AIDS. He was around my age. This struck enough fear in me to get back into care. This won't be easy but I am going to try this again. I truly understand why it is so hard for people my age to be med compliant. Unstable living conditions, fear of unwanted disclosure, just not being ready yet, the constant reminder of the virus. It is very hard! This is something I would want all HIV counselors to understand. Client-centered counseling doesn't mean that we force our ideas about the meds on people or when we think they should start. We should really try to understand the complications the person may face and then work with that client to get them to the right mental place.
Read Jermaine's blog, PozLyfe09: Raw Talk on Life With HIV.