I've been living with HIV for (going on) 22 years now. I almost can't believe it, seems like a lifetime ago. I was just 27 when I was lying in a hospital bed dying; my children were just babies. When I was told that I had AIDS I didn't think I would see their next birthday and now my grandson is around the same age his mother was when I was diagnosed -- and I'm enjoying watching him grow.
Amazing how things can change.
But I spent the first 10 to 15 of those years waiting to die. Constantly looking over my shoulder for some opportunistic infection to wipe out my weakened immune system and kill me. Perhaps a flu or pneumonia, maybe a new comorbidity, or maybe my counts just decide to drop. That's not an easy stress to live under.
I cherished every day with my kids after my (seemingly miraculous) recovery, but I don't feel like I was a very good parent during this time. I was moody as hell and terrified of the future, I felt physically and emotionally absent -- though I was there the whole time. I was terrified of my own blood, I felt like a bottle of poison. This made me afraid to bleed around my kids (or anyone else for that matter) so I didn't play much; I didn't even want to leave my house. I detached and withdrew from everyone. An introvert inside a turtle shell.
I didn't know anything about U=U (Undetectable equals Untransmittable). I didn't know that I couldn't transmit this virus to anyone. That knowledge would have really helped back then. I was just told that being undetectable meant that I wouldn't die of a common cold. Wasn't all that comforting, but at least it was one less thing to worry about I guess.
But after many years of self-imposed isolation I was invited to a conference that would change my life. It wasn't really the fantastic knowledge that I learned that first year, and it certainly wasn't getting away from my life for a moment (though these things were greatly needed and contributed significantly to my healing). It was meeting other people living with HIV that changed everything for me. I met people who had lived with this illness for far longer than I had and who were doing amazingly well; that gave me hope for my future. I learned so much about the disease and how to live with it -- and still thrive. I found a community that understood me, nurtured me rather than judging or fearing me (like I was accustomed to); I found a family.
HIV can be such a lonely disease. Sometimes people fear you, and sometimes you fear what you can do to them. But isolation from the world is no way to live. It's not healthy, not only mentally and emotionally, but physically as well. It can cause stress, anxiety, and depression, and these things have their own ramifications. It can further weaken your immune system, affect your lab counts, and hinder the efficacy of your meds. That's why it's so important to connect with others who share your situation and experiences, who understand everything you're going through, can empathize with what you've been through, and can teach you what to expect from your future. Yes, finding a community changed my life so much for the better.
But aging with HIV is still aging with HIV, and the band plays on. It's still going to continue to progress as we age. Our bodies change and slowly break down as we continue to march towards gradual collapse of our physical prime, and the meds aren't kind on the process either. Our bodies are unique so effects can vary; we may lose memory, become more susceptible to illness, and just generally require more attention to our bodies. We need sleep and rest, exercise (physical and mental), a proper diet and plenty of water, and to always keep doctor appointments.
For sure, aging is serious business and not to be taken lightly, especially when you live with HIV. But as I've learned from my community, it's also not something that needs to be feared. We can still live long, productive, and dignified lives with HIV, even through our journeys of "maturing". And with community by our side, we know we're not on this journey alone.
I hope you're able to find your community. Because there's so much beneficial wisdom and knowledge to gain from their experience, so much healing in their connection, and such inspiration in their action. That's a big part of the mission of The Well Project, to offer community to women living with HIV. We're here to educate, we're here to listen, we're here for you.