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Survivor's guilt
Jun 25, 2014

The film "The Normal Heart" has worsened my feelings of guilt at surviving as HIV+ for thirty years while everyone else I knew as a young man are dead. We long term survivors get lost in the present atmosphere that says HIV is no longer a big deal. It is a big deal for us as we deal with the effects of long term infection and the accumulated ravages of taking the meds. I feel alone and forgotten; and, I envy those who died back in the '80's and early 90's. I have had a full and satisfying life with a 34 year marriage. I know I should be grateful for my survival. Nonetheless, I attempted suicide in January and recently bought some St. John's Wort so my meds will fail while I can tell my IDS I am in compliance. Does anyone care about those of us who survived the '80's as HIV+'s?

Response from Mr. Vergel

Like survivors of any war, we have to find ways to move on and find happiness in a post-trauma world. Some of us do that better than others. I must admit that I try not to remember the past too much since it brings a lot of sad memories of my taking care of my dying friends and lovers. Part of me wants to put all that behind. I do not even want to watch any movie or TV shows related to the old days of AIDS. I have tried and that has left me horribly depressed. In many ways, I think some of us quietly walk around with an undealt post traumatic stress disorder (PTSD) that gets triggered by certain memories or circumstances.

Everytime someone I love is sick I get very transactional and usually do not dwell in the pain of seeing that person suffer or die. I try my best to do what the person needs then and try to protect myself since I am hyper aware of how destructive depression can be for any of us living with immune dysfunction. Some people may say I am not "dealing" with my feelings. But we all cope differently as years go by and we get surprised by yet another year that we thought would never arrive.

Sometimes I allow myself to hate HIV for all that it has taken from me. But I only allow this indulgement in that feeling for a few minutes. I try to shift to how something as horrible as HIV changed me for the better. Life has dealt us with these cards and it is up to us to play the best game we can.

Nothing we do will bring our friends back. Not even our constantly remembering them. I know that all my friends and partners who died would be happy to see me surviving and making something of their tragedy instead of giving up hope to join them in dust.

You are depressed and you need to make a decision. You need to decide if your survivor guilt (or what I call survivor exhaustion) will rule the life you still have. You need to decide to look deeper into what you are feeling now. You need to decide to seek professional help and even antidepressant treatment. Whatever "triggered" your survivor PTSD is trying to tell you something.

I try my best not to use HIV as my excuse not to enjoy life. I am more successful some days than others. Fatigue and body aches remind me that I am not "normal". But how can we "normal" after enduring what we have?

I believe some of us are still here for a reason. The reason may be to give love to those around us, to remind people never to give up, to be the health leaders of our worlds, to remind doctors to be empathetic, to still be relevant even if some of us may regard ourselves as "damaged goods". All these reasons honor our dead friends and loved ones that were not lucky to get the new drugs that saved us. And we should also remember to honor the living around us that may suffer when they see us not doing well.

You say that you have had a satisfying life with a 34 year marriage, and then you say you attempted suicide. You know that those two statements do not make sense together and that you really should look deeper into what may be an experience that could enhance your growth. Once I heard "Growth is messy" which reminds me that what we learn through horrible times can in fact make us growth.

I hope you get the professional help that you need. And I hope you come through the other end with yet a new understanding of your place in the world as an AIDS survivor that still has a lot to give.

Know that you are not alone and that many of us go through what you are going through. For most of us, it gets better and we manage to continue through this path of self-discovery. One day at a time.

Taking St. John's Wort to decrease blood levels of your HIV medications will only lead to resistance. Even though that herb is used for the treatment of depression in Germany, the evidence is not great for this indication. Please stop it and I hope you get to see a psychologist or psychiatrist that can prescribe a medication that can improve your depression without affecting your blood levels of antiretrovirals. Your primary care physician or local AIDS non profit can probably suggest a specialist that deals with HIV related grieving.

I am glad you reached out and I hope you let me know how you are doing soon.

Together in health,

Nelson



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