It's been almost a year since seroconversion, diagnosis and starting Atripla. I still experience shock several times a day when I remember that I now have the virus. I can rarely forget that I have it and behave as a normal person. I continually feel inferior, and believe that if it were generally known, the vast majority of friends, coworkers and family would reject me. Only a handful of people know of my status: my wife, my son and daughter, and their significant others.
I know that my career in healthcare would be over should my status get around. In fact, it feels over now, as I am currently underemployed, due probably to my advanced age and having lost a decent position as a professional mental healthcare provider for reasons unrelated to having the virus. The double whammy of learning to live with the virus and earning one third of what I used to has been difficult, to say the least. I am fortunate to have the support of my wife, and, because of the advanced age, I can draw Social Security. I have a double financial safety net, and it seems we planned well, that despite being working class, we might have a comfortable retirement (if my healthcare doesnt decimate that). She also is vital to my mental well-being, repeatedly saying that I will outlive her, that we will do fine on the reduced income, that we will have enough insurance to meet our needs, etc.
In spite of what's right about me and my situation, I am deeply depressed and anxious. I ruminate about dying. I envy those selfless healthcare workers who contract Ebola and die; people who die in accidents, war, and violent crimes. Yet here I am, looking and feeling no different from my previous healthy self, paying nothing more that copays and deductibles, and having an unpleasant, plastic tasting burp after taking the meds.
And then Robin Williams took his own life. He shook me at my core. I do not envy him or the unimaginable darkness that drove him to it. I am not there, and I am not him, but I feel his loss as if he were part of me that died.
I'm sure he knew, as I do, that it is a mistake to define oneself by ones errors and poor choices. But what is there to learn from choosing an irreversible, life altering virus, and how do I not define myself by it? For me, it's made me value what and who are important. I'm now filled with a profound humility. All traces of previous arrogance are gone, I think and hope. I no longer criticize anyone or anything because I've made the ultimate poor choice, and its unfixable.
I probably will never be like I used to be. I had a very low threshold for joy. Now I long for the experience again. The world didn't change, I did. All the same sources of joy are still there. When will I forgive myself for ruining my life?
Hello and thank you for writing. I'm sorry to read about your distress although am happy that you are able to experience some gratitude for your circumstances and your supportive family. Learning to live with HIV is a long and ongoing process and one that requires great energy and focus. The shame and stigma that accompany the virus are very real, but that does not mean you can't move beyond them. I trust you will find your way to a new (and proud) definition of who you are, but you can't think your way to that point or do it alone. We all need the loving support of others (and more than just our family) to help make this, the most challenging adjustment we will ever face.
I recently heard something that I will pass on to you: we are not people living with HIV, but rather HIV is a virus living with us. Don't let HIV define you. You clearly have a much broader identity. Reconnect with it and then use it for your own benefit and the well being of others.