*The following narrative is from one of our HIV-positive scholarship applicants. It has been minimally changed to remove any identifying information.*
I contracted HIV because I failed to use sexual precautions with my long time monogamous partner, to whom I would have been married if it were legal at that time. I never like answering the question, ‘how did you get HIV’. It has been my experience that people want to decide for themselves if you “deserved” it or not based on their judgment of your behavior.
It has been my experience that people like to deny the reality that life can be randomly good or bad. It’s part of human nature, so I generally prefer to avoid the question. It would make no difference if I had contracted HIV in a more reckless part of my youth a decade earlier. I am not “good” or “bad.” No virus that I am aware of has a conscience.
How has HIV affected my life? I have never been sick with anything related to HIV. However, the medications I take do increase my cholesterol.
Socially, there is a significant impact on my life. HIV limits not just an intimate relationship, but the level of candor I use with some of my friends. I like my privacy. So, I’m sure some people have perceived me to be more distant than I may have preferred because I don’t want to deal with their stigma and take on the role of educator. I am just trying to live my life. In this way, it is isolating to have HIV.
Until last year, I would have said that social impact was the extent of how HIV affected my life. However, unfortunately, I was part of a HIPAA violation by a major insurer that publicly revealed the use of HIV medications for over 12 thousand people that became a class action.
I live in a small town where I have deep roots, and you cannot put the cat back in the bag. A community college class which I was originally asked to teach (and am highly qualified for), was suddenly “not being offered” despite it being a class that had been offered for years. Gossip travels fast, and informed people will find ways to bypass giving the actual reason for backing out of something like a job offer.
I have not yet received compensation from the class action, and I don’t expect it will be much if anything. Besides, what price would balance out the repercussions for the rest of my life anyway?
I have a similar story with my prior employer. They solicited me to come to work for them, invested in my education as a career employee, and then, suddenly, they had no more contracts for me, despite the fact that I had been a lucrative asset to the company.
Having exhausted my unemployment, I’m investing my time in building my own business where I won’t be subject to other people’s ignorance. Small business management is where I need more education. I suspect I will end up relocating because of the insurer’s action.
I suppose I could say I wish people knew they had nothing to fear from me because of HIV, but that information has been in the public realm long enough, that people have made up their minds regardless.
So, the main thing I wish that people living without HIV knew, is that they should take care to avoid it, not for any moral reason, but even if it does not affect your work or your health, it takes a good deal of time to manage well. The time you spend managing your lab-work, specialist visits and insurance is time you could be spending with friends and family or building your career.
Conversely, if you should happen to contract HIV, it is not a death sentence. You may feel like your breath has been knocked out, but you will catch your breath and keep going. There is support for you, and your life will go on. No one can say that there won’t be a cure in our lifetime so that people can recall HIV in the past tense. There are many reasons to stay calm, and never give up hope.