“I know it’s going to sound cliché, but forgive yourself - work on that first, work on yourself first. Don’t worry about telling anybody anything until you become comfortable with what being HIV positive means for you. And what you want it to mean for you, give some thought to that. Go to reliable resources to get information. Get you a doctor who knows about HIV - not every MD knows or cares to know about HIV. Even for infectious disease doctors, cultural humility is another important aspect that needs constant attention. Because even though they may be an infectious disease doctor, they still may have biases, attitudes, and prejudices towards certain patients and how they live their lives. So you have to find a doctor who’s willing to work with you. Working with a doctor should be a partnership not a dictatorship.” (3/3)
I started two to three years after diagnosis to seek more information and more support.
I was surprised at my family and how supportive they were. I did not expect that because I come from a very physically and verbally abusive upbringing. It was a violent household, we were never a touchy, feely type family. So I was amazed at the response when I finally disclosed to my mother that I was HIV positive. She was the first one I told. And given that I was her only son, and considering my Baptist upbringing, I expected her to react very badly. But her reaction was the complete opposite of that - loving, caring, and supportive. On the phone conversation with her, she was like ‘do you want your sisters to know.’ And I was like ‘yes, you can tell them.’
We were waiting until I was moments from dying and then we’d tell my father what I was dying from, but it really didn’t work out quite that way. I did a commercial for the State Health Department, speaking as a person living with HIV. My father’s sister saw the commercial, so there was a message a phone that night, ‘Leon, your father knows you’re infected, you better call him up.’ I was dreading this conversation. So I get up my nerve, I call my father up and I’m like, ‘dad I heard you found out I’m infected with HIV.’ I’m holding the phone away from my ear because I know he likes to yell and scream. He asked, ‘How’re you doing? How’re feeling? Are you taking your medications? Do you need rides to the doctor? Do you need money for medication?’ At that point I’m looking at the phone wondering, ‘where’s my real father.’ And he kept asking, ‘why am I finding out after all this time?’ Finally I took a real deep breath and told him, ‘because you’re not the easiest person in the world to talk to about anything.’ He got real quiet. From that day forward the abuse stopped. It stopped completely. So my family rallied around me, they all moved to live near me. I asked them, ‘out of all the houses in Detroit, why you have to come live up near me.’ And they said, ‘because in case you get sick, we can get to you quickly.’ Soon after I disclosed, they also started saying ‘I love you’ to each other. I was fortunate that they were and still are very supportive.
For me, when I got my diagnosis it wasn’t an ‘oh my god’ moment at all, it was kind of ‘mhm, I knew this was going to happen’ moment. What had got me to go and get tested was I woke up one morning with oral thrush and that freaked me out. So when I saw that happen in my mouth I thought, ‘oh no this isn’t good,’ and went to get that cleared up. I then thought to myself, “I bet I know what the cause of this is, it’s that HIV thing that I’ve been hearing bits and pieces about.” When I got my diagnosis, there wasn’t a whole lot of prevention like it is now - particularly in the city of Detroit. I remembered going and getting tested and lo and behold it was positive. I just went, ‘mhm, okay wait for the other shoe to fall,’ I was very pessimistic with my thinking back then. But I didn’t break down and cry, I think I entertained suicide for a millisecond and chose not to do that option because I’m a chicken when it comes to pain. I don’t handle it well. That was my day of diagnosis mindset, kind of expected it. I had fear, apprehension, anxiety about sharing the information with who I felt needed to know. I never asked why did this happen to me - I agreed to have sex, I was a willing participant - so as a result I became infected with HIV. Who’s to blame for that? I’m to blame for that. So there was never any anger, self-pity, or sadness. Sadness did come into play, because many of my friends started to die from their diagnosis, so I was going to a lot of their funerals. It got so bad that at one point I said I’m not going to anymore funerals, I can’t take it. That’s where the sadness comes in, seeing my friends laid out there in a coffin and wondering when my number was going to be up.
“I was diagnosed in 2011, living in Silicon Valley, California. So I got sick, pneumonia, and all my doctors had asked for me to have an HIV test because of the pneumonia - high risk. I said no, don’t need it, don’t want it, no. Well, in Fall of 2011, I was in the hospital for a week, with the first couple of days in the ICU. Those first couple days I was in and out of consciousness and when they finally brought me to the regular room, that’s when the doctor came in. He was really matter of fact. Just said ‘Do you know what’s going on? Let me tell you, you’re HIV positive.’ He just said it. How was I supposed to interpret that, right? I was devastated, angry and told him to get out of the room, leave me alone. I didn’t know how to react, I couldn’t be scared, the only thing I could be was mad. And I didn’t appreciate the way he came in and told me. He could’ve had a therapist or somebody with him, but he just came in like ‘Oh, you got a cold.’ I thought that was really messed up.
I had a great doctor in California. She had a lot of HIV patients - positive patients - that’s what we call our community. It was great, but it was scary since I was sick for a long time. I was out of work for two months, but luckily I could work from home, but still that’s how serious it was. So I didn’t really have a support system, but what I did have was my brothers and sisters. Called them up and told them, only because I didn’t know how to handle it myself. It’s twelve of us since my dad was married twice, I’m eleven out of twelve. They were really supportive over the phone, it was the support I was looking for. But for those two months I was really angry. Like I’m not violent, but I would find myself enraged, throwing things, my collectibles. It was hard.” (1/4)
“They closed my work location that following spring so I moved back to Michigan and stayed with my sister. When I came back things were different. There was a tension between me and my brothers and sisters, I couldn’t really explain it. Why were they acting different towards me? My sisters that I thought that I was close too were really sh*tty and I felt they were treating me different, it was a barrier - standoffish, a different vibe. I couldn’t figure out what it was, I just thought ‘Ugh, aren’t they funny acting.’ After I was here for a few months I figured out it wasn’t them that was different, it was me that was different. Because it changes your whole perspective, it changes your outlook on things. I became a different person when I was diagnosed.
Again I thought I had that support system. Well one day my sister was drinking, she doesn’t ever drink, and she just went into this tantrum ‘I don’t care what the aunties say, I’m not afraid to drink after you. I don’t care what the brothers and sisters say.’ I was devastated, like they were discussing me, somebody’s afraid to drink after me, somebody has all these ignorant ideas going on. Nobody said any of this to me, except my sister when she got tipsy, that was it. It was like the old stereotypes ‘If you sneeze on me I’m going to get it.’ I thought they were on my side, in my corner, my support system. It’s not my job to educate them for being ignorant, they’re way older than me. In no way am I going to educate them and in no way am I going to pretend this didn’t happen. It was hurtful, I was devastated, I couldn’t believe they’d treat me like that - betrayed, I felt really hurt and betrayed.” (2/4)
“I had gotten off my meds, I couldn’t carry my insurance. I fell behind on my payments and it lapsed so I couldn’t really get it back. So I went a year without my meds, a year of depression, I just really didn’t click with anybody. I was suicidal. I sold everything in my storage, because, with whatever I could fit in my backpack, the money in my pocket, and clothes I had on, I would just go as far as I could go. That’s how serious I was. That’s how f*cked up I was. Trying to escape from where I was in life, walk away from life, away from it all. I had just cut off ninety percent of my family off over some dumb, ignorant sh*t.
I went to the social services office right down the street. Because if they couldn’t help me, I was going to be gone in a matter of a couple of days. But I went in there and talked to one of the people. I was really emotional, falling apart, but she was comforting while I asked ‘Who can I turn to? Where can I go? What am I supposed to do? I don’t know this world? I don’t know how to deal with this diagnosis, being positive?’ And she was great, got me connected with the mental health in Washtenaw County and I met with them a few times. They got me connected with UNIFIED, but that still took a lot of years to get through the stigma, the shame of it all.
I started meeting with my case manager at UNIFIED and I got back on my meds. All of a sudden I had doctor appointments scheduled every week; I was going to see a therapist; like literally every week I had something to do. When I first started going to UNIFIED, if I was early to my appointment, I wouldn’t wait in the office and have people come in and see my sitting there. What if someone came in that I knew? It was this tremendous amount of fear. I would sit under a tree at UNIFIED until two minutes before my appointment. I would do this for months because that’s where I was, I would feel ashamed. And I felt turned away by my family and nobody understood how to deal with me and talk with me about it. It took me a long time, through going to UNIFIED and therapy, I just immersed myself into volunteering at UNIFIED. It’s my UNIFIED family.” (3/4)
“It helped me come out of my shell. I did this group called Healthy Relationships, that brought me out a little bit but it was a super small group, like four of us. I got more comfortable but I had to go through a lot of coaxing, I don’t do well in groups. But I would say that this group is kind of what helped me realize ‘This is not so bad’, because I got to meet with others who were positive, even if it was a few. It was still the interaction, that support… that was my first step in coming out. I started doing more volunteer work, helping with events like this, doing the setup and cleanup. Part of the reason that I started doing so much volunteer work - I mean I had already done volunteer work throughout my life - but UNIFIED was special to me, that’s who helped me. They helped me deal with it emotionally, physically, helped me with my doctors, a bridge card, getting my insurance right, making sure I’m on the right meds, making sure I’m going to my doctor’s appointments.
But it had been months and months before I had been to a doctor’s appointment by myself. Because I equate it as never going to be some good news. My case manager at UNIFIED would have to be with me because I’d have a lot of problems and anxiety attacks. The doctors were giving me statistics like my viral load is 900,000 and I’m just inundated with all this information and all this medical lingo - I didn’t know anything about it. It’s just like a foreign language, I don’t know what the f*ck they’re talking about. I came to a point where I was going to embrace it and educate myself. And that was a part of my learning process where I was going to be more comfortable, confident, positive, and an active member in the positive community.” (4/4)
“December 7, 2010, which is the same day the Japanese attacked Pearl Harbor. That’s how my mom remembers that day - we call it D day. My dad had taken me to the doctor because they had ran some tests and wanted me to come back. I went into the doctor’s office and they told me I was diagnosed HIV positive. The only thing I could remember is that it was an out of body experience, where I was actually up here looking down on what was going on in disbelief. My doctor handed me a piece of paper with resources to call for help and treatment. I came out, my dad was out in the parking lot, and we both started to cry. He gave me this big, huge hug… he didn’t say anything to me besides ‘I love you.’” (1/4)
“So we then went home to tell my mom. My mom freaked out because in 2005 my cousin had passed away from pneumonia since he was HIV positive. All we knew was my cousin was HIV positive and he had died. So my mom started freaking out, crying, it was a very emotional day... I felt depressed and broken. The only people who had known for the first two years were my mom, dad, sister, and brother. We didn't tell anybody else - neither my family nor myself felt comfortable with it because of what happened with my cousin. It wasn’t something anyone else needed to know until I knew more about it.” (2/4)
“I’d say the thing that’s cool is that after educating myself, family, and friends, I realized I’m not different than anybody else - I don’t need special attention - it doesn’t get me down anymore. Before I thought I was lost, damaged goods, nobody’s going to want me; I’m never going to have a family of my own; nobody’s ever going to want to spend the rest of their life with me; I’ll never get married; nobody’s ever going to want to have sex with me again. But that’s just not true. I created stigmas in my own brain about what I thought life was going to be like with this. It’s going to be seven years on December 7, so really life has gone back to normal. I don’t even think about being HIV positive. Really the only time I think of it is when I fill my pillbox for the week - it has no effect on my daily life now.” (3/4)
“I would tell someone going through HIV that everything’s going to be fine. This is not a death sentence anymore. HIV is completely manageable, don’t get down on yourself. I hope that someday people feel the same way about HIV as they do with cancer. When someone gets cancer people feel sorry for them. There’s a lot of stigmas with HIV and you have to look past it - because people are always going to have stigmas about stuff. Just knowing that there are programs out there like UNIFIED in a person’s community can educate you and help you through this. You have no reduction in your life expectancy as long as you get treatment.” (4/4)
Introduction
Awareness: Please be sure to spread awareness of the Redefine HIV initiative to family, friends, and others in your community. The larger the reader base, the more effective the awareness initiative can be. Also be sure to check out our Facebook page 'Redefine HIV'.
Blog Post Titles/Categories: As a quick introduction to how this blog will be formatted, blog post titles/categories will be labeled as:
- 'Positive Community' - For posts dealing with those with HIV
- 'Positive Volunteer' - For posts dealing with those who are volunteers in the positive community
- 'Positive Friend/Family' - For posts dealing with those who are friends or family members of someone in the positive community
Posting: I will be posting 2 to 3 times a week.