My husband (now ex) was who I got HIV from. He told me he'd had a negative HIV test — It affected my ability to trust for a long time. Every life decision I make has to take into account how it will affect my access to healthcare and ability to get my medications.
One of the hardest things has been how it has affected my relationships. I've spent 20 years trying to figure out who to tell, when to tell them, and how to do it. I've been so lucky in that it has had very little effect on my relationships. Only one person had difficulty remaining in a romantic relationship with me because of it, and I've only had positive responses from family and friends although, of course, it's been very hard on some of them. Often it just doesn't seem like there's a good or appropriate time. Over time I began to forget who knew and who didn't. I would worry that friends would feel betrayed because they heard it from someone else and I hadn't talked to them about it myself.
I still struggle with whether/how/when to let my clients and colleagues know.
Some days I just want to wear an "HIV+" t-shirt every day for the rest of my life so I never have to tell anyone, it's just out there from the start.
Until recently it has interfered with my ability to be intimate with others due to fear of infecting someone else. I'm so grateful for ongoing research and now the U=U project that has made it clear that since my viral load is undetectable I don't have to worry about passing this on to anyone else.
In some ways it has had a positive effect on my relationship with my long-term partner because of the conversations it opens up for us. We watch movies like Philadelphia, The Dallas Buyers Club and The Normal Heart and are so grateful for the life we're able to share, and so heart-broken for those who have gone before me.
I was so lucky that the first cocktail of medications was approved by the FDA a month before I was diagnosed, so even though I nearly died of Pneumocystis Pneumonia before being diagnosed, I was started on an effective medication regimen right from the start and didn't have to suffer the AZT poisoning so many others did.
My HIV status has also brought me and my partner closer because he's always been so supportive of me and has honored my choices about when to disclose my status to his children and our mutual friends, as well as how I have chosen to handle disclosing to employers, colleagues, etc. These are difficult decisions and conversations and his support is invaluable.
It has also made me appreciate my health more than I would otherwise. Having been so sick and weak for so long, I cherish being able to hike, bike, ski, take our dogs out for long walks, do yoga, etc. I'm grateful to be able to be active and I do everything I can to support my physical and mental health. It's not to be taken for granted!
I think many people still tend to think of HIV/AIDS as a disease of gay men. This increases stigmatization against both the disease (due to homophobia) and gay men (because of judgment that only they contract and perpetuate this "horrible disease" so they must be "bad").
It also makes it easier for people to discount the disease as something that "won't happen to me," and that view, that ability to distance oneself from it, gets in the way of funding for research, treatment and education. I think when people realize it truly can affect anyone, regardless of what you look like, sexual orientation, socioeconomic level, etc., that's when the general public will get behind prevention and cure on a broader level. It's also important to draw attention to transmission rates among women so women will see the importance of protecting themselves to the level that's possible and the importance of getting tested, as well as for the medical field to see the importance of testing women.
I had been going to the ER every few months for about a year due to respiratory and GI problems and was not tested for HIV until being admitted to the ICU where, thankfully, my nurse had had experience treating patients with AIDS. And this was in Palm Springs, CA, in the late 1990's!
If I had been a male I don't think there's any question that AIDS would have been considered as a diagnosis much, much earlier.
You can see Shaney McCoy's site Ready to Feel Good here.