The Lovely “The #HIVVDayShitList”
by Josh Robbins
It’s a word I’ve been tossing around my entire life. I’ve said it to my parents, mostly to my mom. I’ve used it to describe my feeling towards a music artist. I say it to friends and I use it at times sarcastically to show dissatisfaction with something someone says: I love when you are so passive aggressive.
It’s what I feel I’m trying to find on dating apps, although it never happens. It’s a verb and a noun. It’s an action, a state of being, and a commandment. I listen to sermons about love at church; I see it unfold on reality television; and leading up to Valentine’s Day, I watch a stream of commercials that pitch their product as the perfect mechanism to show a love interest the value and depth of it. This is perfect. I love you.
I either missed the rally for hearts and red roses, music crescendos, and watching Titanic reruns or I am just not feeling the love these days. And no, I do not want your little V-day cards. They are pointless. I mean really.
Here’s a jaded, but incredibly honest fact: Not everybody feels tingly and warm on Valentine’s Day. And I don’t really care about all the successful relationships out there. Sometimes, we all just need to vent a bit about where we are in life, what we are going through, and star in our own melodrama.
I am living with HIV. It’s not the same tough road that those before me experienced but it’s not stigma-free yet either. And I’m jaded at times about being single and living with HIV.
It literally blows, at times.
This year, instead of listing the top articles, news stories, or hearing incredibly powerful and moving love stories, let’s get our jaded, tired, and single selves on and share the realities of living with HIV right now as described by a some advocates in HIV awareness.
Here’s what we do not love about living with HIV. This is the #HIVVDayShitList just in time for the big lovely couple’s day.
“Shitty … dealing with pharmacies and mail order services that are inefficient and unequipped to handle multiple meds and auto-renewals. And that’s IF you have good insurance. The bureaucracy involved for those who are non- or under-insured is even worse.”
—Mark S. King
YES, that’s pretty shitty!
“Having to explain to people that it’s not the ‘80s or ‘90s, it’s not a death sentence, and that having HIV isn’t shameful or dirty.”
I hate the word: dirty! It’s just shit!
“Trying to date and always having to make sure I’ve packed enough pills when I travel in case there’s an unexpected extended stay to where ever I’m going.”
I thought I was the only person who never packed enough pills. Shit! I say!
“Hardest thing to me about the virus: survivor’s guilt. Living in a modernized time from the start of the epidemic and people are still dying because of stigma. They could still be here and it’s hard to miss them, do the work, and honor them without being angry.”
Guilt is completely the worst! Totally agree here.
“The frequency with which I get HPV and how painful it is to get rid of.”
—Sean McKenna, Long-term survivor
I hear that shit burns. Ouch!
“It used to be not being able to have sex with hot HIV-negative guys but thankfully, undetectable and PrEP has changed that.”
Well, look at Alex sharing this shit! It was supposed to be a list of downers—here he IS bragging!
So what’s mine?
It’s always been the worst part of living with HIV to me—diarrhea! As a gay man, that shit (no pun intended) used to stop me from having sex. And I’m not alone in this. Others living with HIV share this with me. I know, because I talk a lot about diarrhea.
According to a recent survey of people living with HIV, 27 percent currently have diarrhea, while 56 percent have had diarrhea in the past and 61 percent of those with diarrhea reported having it for more than five years. And, 30 percent of those currently experiencing diarrhea said they never discussed diarrhea with their doctor and/or reported feeling that the doctor dismissed or “blew off” their issue with diarrhea.
But, luckily for me, I decided to talk to my medical team (yes, my team— from the receptionist to the physician and the lab techs… even the valet at the doctor’s office, are all a part of my medical team) about the only FDA approved treatment available for people living with HIV that experience diarrhea—Mytesi.
And I LOVE being able to honestly say: it worked for me, just like the data in the trials proved.
Mytesi is a prescription medicine that helps relieve symptoms of diarrhea not caused by an infection (noninfectious) in adults living with HIV/AIDS who are on antiretroviral therapy (ART).
Mytesi is not approved to treat infectious diarrhea (diarrhea caused by bacteria, a virus, or a parasite). Before starting you on Mytesi, your healthcare provider will first be sure that you do not have infectious diarrhea. Otherwise, there is a risk you would not receive the right medicine and your infection could get worse. In clinical studies, the most common side effects that occurred more often than with placebo were upper respiratory tract (sinus, nose, and throat) infection (5.7%), bronchitis (3.9%), cough (3.5%), flatulence (3.1%), and increased bilirubin (3.1%).
So, what about you? What would make your lovely “Shit List” this Valentine’s Day?
Josh Robbins is a GLAAD Award-nominated blogger for imstilljosh.com and an HIV positive patient advocate. He is a paid consultant for Napo Pharmaceuticals, Inc., makers of Mytesi. He lives in Nashville and is single and ready to mingle. Follow him @imstilljosh.