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All this, and now I have to live?

Feb 5, 1998

When I was first diagnosed with AIDS, I came to peace with it by realizing it was going to be my ticket out of life. I thought the end would be near, and I embraced the idea of returning "Home". Now, with all the new advancemants, I feel like I was gyped. I'm finding survival to be much harder to deal with than death. Now instead of a relatively short terminal illness, I have a lifetime of pills, tests, and anxiety to look forward to. Am I the only one having theese feelings? I can't imagine so. Where do I find the strength to face this cronic condition, and commit to fighting it every day of my life?

Response from Mr. Shernoff

You are definitely not alone in having some of the feelings you describe. It is far more difficult to potentially have to live out a normal life span managing a chronic, yet life threatening illness like AIDS, than to die from it. Yes, this can be the ultimate challenge for many people. How do I find and create meaning in a life that is so defined by illness? There are no simple answers to the question you pose.

What concerns me is that you sound so trapped by the potential of living longer. Are you feeling better now than at an earlier time in your illness? If so isn't this something to rejoice about? Is there the likelihood that you will even grow stronger and more healthy? Remember that your life is not a sentence to be served.

I assume that you made the decsion to seek medical care for your condition and that you have decided to follow your doctor's suggestions. Thus your longevity is not just something imposed upon you, but is something that you are an active particpant in choosing and take an active role in helping maintain. Thus you have chosen to do medical treatments. If you truly feel that your life is so bleak, overwhelming and unsatisfying, it is always your choice to stop taking your medications and cease receiving medical care. Yet you choose to fight for your life. That is a strength to connect to and build upon.

The fact that you are reaching out and asking the question means that you indeed do want to continue to live and improve the quality of your life. That is a brave decision, and one that you do not have to face alone.

Are you in an AIDS support group where you can discuss these valid and crucial issues with other men and women who wrestle with similar issues on a dialy basis? If you do not live in an area where there are AIDS support groups and since you have a computer, you can go to one of the online chat rooms for people living with HIV and AIDS and reach out to people there. If you are not in your own psychotherapy, it probably would be a good idea to begin, so as you can have the additional support found in that venue as you learn how to turn this current enormous adversity into something that is manageable for you.

Do you have poeple who love you and whom you love in your life? A family, a partner, children or a beloved pet? Many people find the strngth to continue in the connections they have forged with other people. Do you have a religious or spiritual belief that you can draw upon to help you during this difficult period in your life? If you are a person of faith, have you asked your clergy person for pastoral counseling so that you can discuss these concerns with him or her?

Finally there is always finding some form of community service to do and begin to help other people who are in even worse straights than you are. This is an excellent and often rewarding way for us to take the focus off of our own indiviudal problems, and gain some perspective by becoiming involved in working with people who are in great need.

Good luck, and keep on trying.

Michael Shenroff, MSW

apathetic doctors
Declining Treatments

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