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note: I sent this to David directly, and thought it would be good to put here. David, I am sorry that my blog post bothered you so much. I would like to clarify some things. First, I have been living with HIV for 17 years and AiDS for 15. I have been an AIDS activist and educator for longer than that. The point of my post was not to lecture people on risk or to minimize the reality of side effects. I was simply sharing my quick impressions of one chapter in one book. I think you misunderstood my point about side effects- and perhaps I didn't make myself very clear. People with serious chronic illnesses do normalize being sick- including side effects. What I was talking about is our collective perception of how often they happen and how severe they tend to be. It isn't because we are unaware of what is happening in our bodies, or that we aren't savvy. It is, as I said, because we naturally are more apt to notice when others (as well as ourselves) are having side effects and less prone to notice when they don't happen. Also, the book I am reading has nothing to do with HIV and is not written by an HIV positive person (as far as I know). It is about the phenomena of denialism in general and uses a few real world examples to illustrate what the author sees as a growing problem. I am not sure what you mean by things like 'do you think our minds are so ravaged by AIDS that we no longer have any command of the English language,' when I used the terms 'frequency' and ''severity' without defining them. They are common words and I didn't think they needed to be defined. I said in my piece that I think people with HIV think about risk and harm quite a bit. I also never said anything to suggest that I don't think that people with HIV aren't intelligent or fully aware of risk, benefit and harm. I never said anything about quality of life, because it wasn't a about that. By the way- the airplane analogy was the author's- and I don't see what is juvenile about it- it is an example of two closely related activities that involve risk and was used to show how we think quite a bit about the risk of flying (which statistically is the safest form of travel), and most people I know don't think much about the risk of getting in their car. I agree that people with HIV and other chronic illnesses are well aware of the risk-benefit calculations. I also think we are subject to the same errors other people are. I wrote about this not as an piece of treatment education, but just as my thinking on one issue brought up by one book. Again, I am sorry that my blog post wasn't to your liking. I wish you the best. Paul
I found your book review to be extremely condescending, using inane analogies and crazy illustrations to say very litte and ensuring I won't read the book. I don't know the audience that your writing for, but defining "frequency" and "severity" ? Do you think our minds are so ravaged by AIDS that we no longer have any command of the English language? You spend a lot of time discussing risks, but you don't come out and use the terms risk/benefit analysis which is what you mean. My 25 years experience with the HIV+ community is composed of intelligent, thoughtful individuals who are fully aware of how to do a risk/benefit analysis when making healthcare decisions. Including the risk of doing nothing and comparing the risks and benefits of various options. The airplane crash comparison and the decision to risk driving to work or lose the job are juvenile. Anybody who is living with a life-threatening or chronic illness is well aware of the dynamics of risk VS benefits. You did leave out a big part of the equation which is "Quality of Life" There have been occasions when I determined that I could handle the physical side affects associated with an anticipated benefit, but I determined it would substantially detract from my quality of life, so I chose another less efficacious option. You are completely wrong in your contention that HIV positive people exaggerate the frequency and severity of side effects. The opposite is true, after a while we become inured to them and know that we will always have good days and bad days. We also know that we need to try to get past the first week or two because they subside quite often. I know how to handle side effects and I know when they are too severe. I suspect that most HIV + individuals like me have become very familiar and aware of their own body and it's functions. We know when something is working and when it isn't. Your fascination with this book and it's discussion of these most basic survival skills is scary. I became very skilled at making good healthcare decisions early on and it is one of the reasons I am still alive and healthy. If you don't have this knowledge, you should quit your blog and start reading someone else's. The book seems to have been written by someone who sero-converted last week and your review of it indicates that you have about a month under your belt. I suggest you wait for a while before you start enlightening us about the insights you have gleaned from your short term experience.
Although adherence to any specific behavior is important for long-term results, some find it hard to manage, if it requires a routine for more than once a day. At least recognizing that fact, persons can begin to plan a strategy. By pinning down the time effective course. As like adhering to medication, it seems easy enough, how about those side effects? Each day dreading, the next few hours, I guess in the long run, it's better than the alternative.
Cooker
I wonder if you've seen this blog... http://scienceblogs.com/denialism/
January 30, 2010