HIV Fears

Originally published in Colorado's AIDS Newsletter, Resolute! , September, 1996

Not to be reprinted or republished without the permission of the author.

What follows is a piece written by a client of mine the week before he got the results of his HIV test:

When I'm lying awake at 3:00 in the morning, and I'm obsessing about my darkest fears, this is one of my scenarios:

The first fear is to tell my parents. My mother, in particular, who, when I came out to her, told me that she wished there was a cure for being gay, that it is an abhorrent lifestyle, and she stated then that she was worried for me because of AIDS. When I came out to her, she wouldn't speak to me for a while, canceled a trip to Colorado to visit, and left me alone in my tears. I fear that she will disown me if she finds out that I have AIDS. I worry about telling the rest of my family, some of whom don't know about my sexuality, at least not from me telling them. I obsessively picture myself going through one terrible scenario after another with individual family members. I feel that they'll judge me for my sexual orientation and no support me with a deadly disease.

Then comes the fear of telling people at my job. Even though there are some legal protections here, there is certainly nothing to stop the fear and paranoia of a lot of these people. In fact, it seems as if in the administration, some 400 people, I am one of only a handful of gay employees. I don't think they would embrace me or my sexuality, and I wouldn't feel surprised and comforted.

My next fear is that I'll lose my house because I won't be able to work, and I'll run out of money, and the insurance company will cancel my policy through some loophole. I worry that I'll end up homeless and dying. I worry about who will take care of my cats. I worry about what people will think when they read all my personal stuff, my journals, my letters, my fantasies and my realities.

Probably my greatest fear is of being very, very sick and dying. I've never broken a bone or even had a stitch. I know I don't handle pain well, emotionally or physically. I fear that I'll be alone because I've pushed my past lovers away because of my own addictions and fear of intimacy. I'll be alone and suffering and scared and slowly dying; painfully, and in the most horrid way possible, probably blind first. I've pictured a very horrible scenario each time, sometimes with an early suicide so that I won't have to face all of the confrontations that I have rehearsed in my mind in the middle of the night.

I asked an HIV client of mine to write a response to the person who wrote about his pretest fears. What follows is some of what he said:

I remember what it felt like to be worried about whether I was HIV positive or not. I do know that once I tested positive a new set of challenges arose emotionally, but it was easier moving forward knowing I was positive than it was worrying if I was or not.

This process of evolving through the different stages of emotional development around being positive was similar to my grieving process when my lover died in 1989. The reason I believe I can sit and talk about the positive changes that have resulted due to HIV/AIDS is because I have moved through the majority of the fear, the anger, the resentment, etc., into a place of acceptance. Some people find my feelings to be glib or they think I am in denial of my fears. How can anyone accept this fate, some have asked me. My feeling is what is the use in pushing this experience away? It is always there, friends are sick and dying around me continuously. I am HIV+, my t-cells are low and that is the situation. The learning experience is not why has this happened to me but what will I do from this point on. Being with my lover of 15 years through his illness and dying process truly put me in the moment. Watching him, listening to his regrets, seeing all of the family dynamics and all the stuff that goes along with dying I realized how precious life truly is. I saw that so much of what I occupied my life with was a waste of time. Life became so basic at that point and I made myself and my lover a promise that I would make the absolute very best of what time I had left. This is not to say that in the five years that he has been gone I have wavered back and forth, sometimes in the moment, sometimes far from it, but this insight and promise have made my life very valuable.

If there is one thing we all share in common it is the knowledge that we will die. Our society taught us to run from that truth and fear that finality. We have been taught to view illness and death as a failure. Unless we have experienced the death of a loved one at an early age we choose not to look at death. We adopt the attitude that we will deal with it when it comes. What AIDS has taught me is why wait till you are in bed in the last few months of your life to being to assess life? Why wait to heal the relationships with family or friends until you are about to die? Why spend your entire life running from death and building on the fears until it is so out of control that it consumes you? I am not discounting these fears but I am saying that AIDS has taught me to feel them, allow them to surface and to learn from them. I have learned to stop running from them and embrace them.

I learned to make better use of my time. I promised myself I would not do things out of obligation. I have continually tried to be honest with myself and others. I began to take more risks and really get active in living. I researched both Western medicine and alternative therapies to find what combination felt good to me and what would work for me. Spirituality has always been important to me and HIV gave me the chance to really re-examine my belief systems and my values. This disease forced me to look at so much that I was never willing to look at or feel. There was no way to get away from it. Being with my lover and watching him die forced me to feel the vast amount of sorrow that existed inside me that I had successfully avoided my entire life. I was raised to believe that if you ignored the unpleasant, it wouldn't exist. Pretend everything is OK, and it will be. Well, that works for awhile, but it is all there waiting to be experienced at some point in your life. AIDS forced me to look at my deepest fears and to deal with them. I could not believe how much sorrow and anger I was capable of feeling. I am speaking about this like it is all in the past but it certainly is not. I have my days where I sink into the depths of those fears, that sorrow, the confusion, the questions, but I allow myself to be there without judgement whenever I can. I am a human being. We feel. We live in a world of opposites. We feel pleasure, we feel pain. We experience joy, and we feel sorrow. We were taught to welcome some of our feelings and to push away the less desirable ones. AIDS has taught me to being to allow myself to feel the full range of emotions and to be OK with them.

AIDS has taught me more about living than any other experience I've had. The true tragedy of AIDS would be if we did not use it as a powerful tool for transformation, both individually and as a society.

There is a Buddhist story which goes roughly as follows:

A farmer loses all his horses when they escape the coral and run off. His neighbors say, "Oh, that's terrible!"

The farmer responds by saying, "Perhaps."

Then the farmer's son rounds up an even larger herd of mustangs and his neighbor's say, "Oh, that's wonderful!"

The farmer responds by saying, "Perhaps."

Then the farmer's son breaks his arm breaking one of the horses, and his neighbor's say, "Oh, that's terrible!"

The farmer responds by saying, "Perhaps."

Then the military comes to draft the farmer's son, but because of his broken arm they can't take him, and his neighbors say, "Oh, that's wonderful!"

The farmer responds by saying, "Perhaps."

How can we tell whether an event will ultimately turn out "terrible" or "wonderful"? When you think back on your life can you see such quirks and convolutions in your own life? It is ironic that in more than one case people have told me that HIV saved their lives: a "terrible" diagnosis which served as the wake up call they needed to confront the addictive or self-destructive aspects of their lives. One of the main lessons I have learned from this epidemic is its not what happens to you, its what you do with what happens to you that determines the course of your life.

Post Script: Its been a year since the man who wrote about his fears was tested. He is HIV negative. However, the job he feared losing he has lost due to leaving work on disability for depression and anxiety. His being out of work has not lead to his losing his home, his insurance did not cancel his policy, and he is so relieved to be out of his highly stressful work situation he The latter individual is happier than the man who is negative, and tends to enthusiastically describe his experiences with life as "fantastic" and "awesome".

Last messed with November 15, 2001