The longer it’s been since I was diagnosed with HIV, the more I realize that I don’t actually take the time to tell people my story. It’s not really special or extreme, it’s just my life. However, I feel like if I share my story with people, it might bring me closer to them; let them see more of me and understand me better maybe.
There are only a few people who were there with me when I was diagnosed, so most people won’t know this story. To those of you who were there and lived it with me, I just want to say thank you. I have been blessed with some of the most amazing friends and family and I don’t know if I would have made it if I didn’t have the love, support, and strength of those around me. I love you all, so much.
Alright, where the heck do I start? It’s 2012, I’m 23 going on 24, working as a nurse in a doctor’s office and pediatric homecare. I live in Buffalo, NY; my parents live in Los Angeles. Between the two jobs I’m working about 52-60 hours a week with one day off. I have no life; I watch Netflix when I’m home, eat take out food like it’s going out of style, go to work, and sleep. Occasionally though, I may meet a guy and make time for sex or possibly a few dates with sex in between.
I was really great at serial dating men. Meet a guy, think he’s great, date for a couple weeks, have lots of sex, get bored with him or he with me, or maybe I actually start getting to know them and when I see who they are I decide we aren’t a match for whatever reason. On to the next.
At some point in November, just a few weeks before my birthday, I start dating someone. We have sex of course; we make the conscious decision during the heat of the moment not to use a condom simply by ignoring it and getting right to business. We discuss if afterwards, decide that we should, then continue to ignore them.
After a couple weeks of seeing this person with our fair share of unprotected romps in the hay, we decide it’s not a fit. Little did I know that I got an early birthday present.
Throughout winter I got sick a few times but I didn’t think anything of it. I worked in a doctor’s office where sick people were constantly invading my space and the staff liked to pass around bugs as well. Not to mention that I was a smoker and got bronchitis yearly around winter time.
Come January 2013, I’m at work with an ingrown hair on my poor cheek. My supervisor basically orders me to go see my doctor. She’s such a mom, but I appreciate her and she was awesome so I listened. I made a sick visit at my doc’s office and went in. Apparently, I was 6 months overdue for a physical. Ok, ok I’ll make an appointment for a physical. So I did.
While I was seeing the Nurse Practitioner, I asked her if she would order all of the blood work they would need for the physical, “Oh and hey while you’re at it, test me for HIV and any other STDs you can with blood,” or something close to that. So she did, that way when I came back for my physical they would have all of the blood work and could go over the results with me. How convenient, right?
February 2013, physical time! My favorite Physician Assistant Linda sees me, goes over my blood work with me, everything looks good. “Oh wait, where’s the HIV results? Hmm, let me go call the lab and have them fax the results over.” Well the lab wouldn’t give the results to anyone other than the person who ordered the test. Understandable. The NP I saw wasn’t there that day so Linda kindly told me she would have her call me with the results the following day.
Here it is, the day that changed everything. Thursday, February 7, 2013. I get a call from Liz, the NP I saw, while I’m working so I give her a call back on my lunch break. She asks if I’ll come in for my results, I say no. I signed the release which states that you can give me a positive result over the phone. “Ok well it looks like it came back positive.” Those words I will never forget. I can hear her voice echoing in my head as I type this.
She was very kind and gave me information to the Immunodeficiency Clinic’s Erie County Medical Center intake nurse. She told me if I needed anything not to hesitate to call and speak with her. Part of me wishes I would have gone in just so I could have gotten a hug with my results.
I immediately called one of my best friends Peter, told him what happened and hyperventilated in my car. That day all I got for lunch was coffee. There was no way I was going to eat. I don’t remember the conversation at all. All I remember is going back to work and trying to keep busy. It definitely didn’t even come close to hitting me yet.
I called and made an appointment to meet the intake nurse at ECMC, I think the next morning. She told me that the appointment could take 2-3 hours. Holy crud that’s a long time.
When I got into work, I asked to speak with my boss in her office privately. I told her what day I had a doctor appointment and that it was at 8am and it may take 2-3 hours so I would be late that day. She asked me if everything was ok once I told her the length of the appointment. “Yeah, yeah I’m fine.”
“Daniel, is everything ok?” She even used her mom voice on me. I couldn’t hold it in any longer. I said no as tears started shooting uncontrollably out of my eyes. After a moment of crying when I had a moment to speak in between spastic breaths all I could say was, ” My mom is going to kill me.” Then I laughed a little. Back to the serious tears when she asked what happened.
“I tested positive for HIV.” Less than 24 hours after my diagnosis and I’m telling my boss and blubbering in her office. She hugged me while I cried a minute longer. I could not have asked for a better boss. She told me that any time I needed a day off for an appointment or anything not to worry about it. I gathered my composure and went to work. I already felt better having told her and receiving support.
I’m not sure the exact time I told my other close friends. I don’t know if it was the day I was diagnosed or if it was a day or two later but eventually I told them and they were awesome. They were so supportive and all of them were shoulders to cry on. There is no way that I can thank them fully for what they did for me. The only thing I can do is pay it forward to others who come to me newly diagnosed.
Now it’s my appointment. They do some things but I have my dads insurance. No way am I going to allow them to do tests like that so he can see the charges! The last thing I wanted to do was tell my parents, I was TERRIFIED of telling them.
So I decided to wait for the state assistance insurance to go through to get the tests done. The plan I made with the assistance of my friends was that I would tell my parents about my diagnosis after I got the tests done and started medicine so I could tell them I was healthy and they didn’t have to worry.
Quick side note: my mother and I are tremendously close. We speak to each other about everything, including unpleasant body functions. Being in the healthcare field has opened that door for us both and it’s not awkward or weird at all. Lying to my mom every day when she asked me how I was doing and saying that I was doing well was the worst feeling I’ve ever had. Every single time I was on the phone with her I was tempted to tell her. It was torture for me.
Well, since when does anything go according to plan?! A few weeks before my appointment that was going to tell me my results and start me on medicine I was on the phone with mom doing our normal chit chat about life, sans HIV talk. At this point in time my grandmother (mom’s mom) was living at my parents house half the week and staying in an apartment nearby half the week. Mom says she has to take grandma back to her place and asks if I would like to talk with dad. I say sure and start talking with my father.
Now understand, the plan of telling my parents involved me telling mom only and having her tell dad for me. I did not want to tell him myself. When I came out at 17 to my parents the first thing my dad said to me was, “There are disease issues.” The last thing I wanted to do was hear him tell me, “I told you so.”
So during our conversation I tell my dad about all of my illnesses or maybe we spoke about the illnesses recently and he asks me, “Dan, why are you getting sick so much? Are you working too much? Not getting enough rest?”
Well crap. Isn’t that the PERFECT question. So I dug deep, like down to China, for the guts to tell my dad what happened.
“Well actually there’s something I wanted to tell you and mom. Back in February I was diagnosed with HIV…”
At this point I am chain smoking cigarettes like they’re vital to my existence, walking up and down my street because I can’t stand still.
I had no clue how he was going to react. I’m pretty sure I was on the verge of throwing up, I was nervous. He was AMAZING. He’s a businessman, so he kept true to himself and was very businesslike about the situation.
“Ok so where do we go from here? What’s next? Do you have a plan of attack?” I explained to him about my appointment in the coming weeks and he surprised me once more by asking if I wanted him to tell my mom for me. I said that I would do it.
Now mom’s home and he hands her back the phone. I continue chain smoking but I’m a lot less nervous after dad taking it so well. I break the news to mom, still worried about what kind of reaction I’ll get.
Mom was great. As a medical professional, she was medical about it. “Ok so what’s next? Do you have a doctor? What kind of treatment options do you have?” I explained all of the information I explained to dad.
Phew! My parents knew. Now I can share it with anyone. They were definitely the hardest to tell and once they knew, I wasn’t afraid of telling anyone.
Of course I had meltdowns every few weeks for a couple months. And about a year and two years I had meltdowns also. No matter what happens though, I have amazing family and friends to help me through it all. I will always come out stronger than HIV. It might always be inside me, but it will never define me, and it will never overpower me.
I know that was long but I hope it will help people understand or encourage other people living with HIV to share their stories. These stories are all different and the more we share, the more education there is.
Sending love and compassion,
Vegan Dan 💜
HIVegan 