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Dealing with death - follow-up
Oct 25, 2011

Hi Dr. Fawcett:

Regarding your answer to the "Dealing with Death" question recently posed by someone, I did not really find your response to be encouraging at all. Having said that, I certainly realize the uncertainty we are facing given all the variables and appreciate your trying to be so positive and upbeat with your response. However, there was a study out not too long ago (2 years ago?) that said the average lifespan for HIV+ men who were on antiretrovirals successfully was 69 years old. At the time I spoke to my doctor about this and he talked about the controversy this study had stirred up and went on to talk about that 69 years old was the average. In other words, some would live beyond that and some not make it to that age. I could live with that but with, as the original writer of this question noted, it's distressing and stressful to see more and more people who are being successfully treated for HIV but dying of related complications between 50-60 years old. I will be 48 years old in December. I used to think, being HIV+ and non-symptomatic and undetectable from day one that I would probably make it to that magic 69 years old. Now I'm wondering if my number is coming up in the next decade. And what is so distressing is not learning to live your life and to enjoy it day by day (which I think most of us with HIV learned fairly soon after we came to grips with getting it) but how to deal with such an uncertain future and things like should I even bother continuing saving for a retirement that might never happen or use the money now to go places I've only dreamed of going but will never be able to because I'm saving my money for retirement or a "rainy HIV day" should I become disabled at some point? These, and similar questions like this, are very hard to reconcile. Supposed I do go on those trips and live into retirement but then have no money because I didn't expect to live that long? Or vice-verse (i.e., save lots of money in retirement and savings then die before I ever get to retirement age or am able to use it, thus work my life away and not even get to use my hard earned wages to enjoy life). I know there is no definite answer to this but as a social worker I thought you might be able to give us more insight regarding these issues. Thanks.

Response from Dr. Fawcett

Thanks for writing and sharing your feelings about living with uncertainty, which is a signficant problem experienced by every HIV-positive person (and everyone in general, I suppose). I understand your frustration that there are no specific answers to guide us in dealing with these very real life issues. Here are some things I have learned that can help manage these concerns:

1. Identify and express feelings. I sense frustration in your comment, which is very normal, as are anger, fear, and a host of other emotions. Frankly, it's terrible that anyone has to be in a position to make these choices. Those feelings, if unexpressed, can really diminish our satisfaction with living in the moment and can actually make us sick.

2. If you really want to do something, do it. None of us have any guarantees. If there is a place you want to see, or an experience you want to have, go for it. Of course, you have to use good judgment and not cause yourself harm in doing so, such as using up your savings or putting yourself at risk. I have long thought, for example, about doing HIV-related work in some remote areas of the world but have hesitated because of concerns about putting my own health in jeopardy. Given limited resources we all have to balance our time, our money, our energy, and our health. If it's important enough we can usually find a way.

3. Plan but don't project. This is an art which, at least for me, can be elusive. Planning is a rational act by which we make arrangements to protect ourselves, our families, and our health as best we can given our circumstances. Projection is fear-based and can become overwhelming both in terms of time spent imagining every possible scenario and in the strength of negative feelings which can well up, effectively hijacking us from the present moment. I fall back on the serenity prayer by trying to distinguish what I can change and what I need to accept.

Thanks again for writing and take care,

-David



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