To Everyone Living with HIV,
My name is Joshua and I was diagnosed with HIV on June 5, 2012. I remember sitting in the doctor’s office that day staring blankly at the wall as a wide array of questions and emotions rushed through me.
I’m no stranger to health challenges, but HIV was different. I’m a survivor of necrotizing fasciitis and dozens of hospitalizations due to cellulitis, all unrelated to my HIV status. My greatest pillar of strength during those health struggles was my family. But looking to my family for support was harder with HIV because of the burden of shame that I felt came with this diagnosis.
From my point of view, my diagnosis wasn’t simply due to a bout of unlucky circumstances. I felt it was due to choices I had made. I had chosen not to use a condom and to have multiple sexual partners without thinking about the possible consequences. This diagnosis wouldn’t affect me alone. I thought about how it would affect my family, and I questioned if I should tell them at all.
I know now that many people find it difficult to disclose their HIV status to their family. Our family members are often the people closest to us. They may be the ones whose opinions we tend to hold at a higher value. A rejection from a friend or potential lover may hurt, but a rejection from our own blood can be extremely painful.
It can already be uncomfortable to talk to family about sex at all, let alone HIV. It’s common for people with undisclosed HIV to question if our families will still love us. These worries are normal and valid, even for those who come from stable homes. We want to make our family proud, but coming out as HIV-positive isn’t going to make the gold star list our families put on the fridge. Sensitive topics such as sexuality, family values, and religious views can complicate things even more.
At first, I tried my best to distract myself and act as “normal” as possible. I tried to convince myself that I was strong enough. I could muster up the strength to keep my new found secret inside and out of sight. My parents had already been through enough with my other health problems. Adding yet another burden into the mix just seemed unreasonable.
This was my mentality up until the point that I walked through the front door of my family home. My mother looked me in the eyes. She could tell right away that something was seriously wrong. My mother could see straight through me in a way that only a mother can.
My plan went out the window. In that moment I decided to embrace my vulnerability, not to run from it. I broke down crying and my mother consoled me. We went upstairs and I shared with her what was now the most intimate detail of my life. She had lots of questions that I couldn’t answer. We were both stuck in a haze of confusion. She questioned my sexual orientation, which wasn’t something I was expecting. At the time, it was still something I hadn’t come to terms with myself.
Telling my mom about my HIV status felt like writing my own death warrant. There were so many uncertainties and unknowns. I knew that I wouldn’t necessarily die from the virus itself, but I didn’t know enough about HIV to really predict how much my life was going to change. She consoled me and we comforted each other, crying in each other’s arms for hours until all our tears had run out and exhaustion set in. She assured me that we would get through this as a family. She said they would support me no matter what.
Early the next morning, I told my father before he went to work for the day. (I must say that news wakes someone up more than any cup of coffee could). He looked at me straight in the eyes and we connected on a deep level. Then he gave me the tightest hug I’d ever felt him give me. He assured me that I had his support as well. The following day I called my brother who is a doctor specializing in internal medicine. He helped educate me on what the next steps would be.
I was very fortunate to have such a supportive family. Although my parents weren’t the most educated about HIV, we learned about the virus together, and how to cope as a family.
I understand that not everyone is so fortunate. Everyone’s experience disclosing to their family will be different. There’s not exactly an HIV 101 disclosure pamphlet that everyone receives with their diagnosis. It’s a part of our journey, and there’s no precise roadmap.
I won’t sugar coat it: It’s a scary experience. If the reaction you receive is positive and supportive, it can help strengthen the relationship with your family even further. Not everyone has this experience, so you need to make the choices that feel right for you.
From my point of view, here are a few things I suggest keeping in mind as you contemplate disclosing your HIV status:
Take time to think it over, but don’t get stuck imagining the worst case scenario. Hope for the best and prepare for the worst.
Remember that you’re still the same person you were before your diagnosis. There’s no reason to be ashamed or feel guilty.
There’s a good chance your family will ask questions out of concern or just plain curiosity. Be ready for them but know that you never have to answer any questions that make you may feel uncomfortable. It’s okay not to have the answers to all their questions; this is new for you as well.
If disclosing to your family goes well enough, and you feel comfortable, you may find it helpful to invite them to your next doctor’s appointment. This gives them a chance to ask questions. You can also encourage them to talk with others living with HIV.
Know that it is an emotional journey for everyone. Respect each other’s boundaries. Give each other time to process what this means.
It’s common, I find, for people to react off of each other’s energy. Try to remain as calm and collected as possible while also allowing yourself to feel your emotions.
Only disclose within a safe environment where your physical and personal well-being are protected. If you’re concerned for your safety but want to tell your family anyway, consider a public space or a friend’s home.
Disclosure is a personal choice. You should never feel pressured into doing something that you don’t want to do. Only you know if disclosure is right for you. If you’re still unsure about reaching out to your “other family” — the millions of us living with HIV — remember that we’re here to support you.
Disclosing to my family was honestly one of the best choices I’ve ever made. Since I disclosed my status, my mom has come on several HIV-positive cruises with me, my dad has given a speech at work sharing my story in support of a local AIDS Service Organization, and several family members and family friends have gotten tested because they’re now educated.
In addition, I have someone to call and talk to on my bad days, and to celebrate with after each undetectable lab result. One of the keys to a healthy life with HIV is having a strong support system. For some of us, that begins with the family.
Whatever reaction your family may have, know that you are worthy and stronger than you could ever imagine.
Joshua Middleton is an international activist and blogger who was diagnosed with HIV in June 2012. He shares his story to help educate, support, and prevent new HIV infections through empowering others living with the virus to reach their fullest potential. He sees himself as one of the millions of faces living with HIV and truly believes that those living with the virus can make a difference by speaking up and making their voices heard. His motto is hope because hope has gotten him through some of the toughest times in his life. He encourages everyone to take a deeper look at what hope can mean in their lives. He writes and manages his own blog called PozitiveHope. His blog deals with several communities that he is passionate about including the HIV, LGBTQIA+ communities, and those living with mental health conditions. He doesn’t have all the answers, nor would he want to, but he loves to share his process of learning and growth with others to hopefully make a positive impact on this world.