Woohoo, donation, and what REALLY sucks about HIV
Jun 23, 2006
Dear Dr. Bob,
I wrote you several months back, convinced that I was manifesting symptoms of HIV. Let me explain, I am not a hypochondiac in general, but I have always been terrified of this disease. Four years ago, I had a brief relationship and (foolishly) had unprotected vaginal sex. Although my partner did not fall into any high risk categories, I was terribly nervous about it afterwards. I found excuses not to get tested, and the daily pressures of life eclipsed my fear after a while. I got married a year ago, and my husband and I began discussing when to start a family. I did some routine research on trying to conceive, and prenatal care, and there it was - pregnant women must be tested for HIV. I panicked. What if my happiness of the past year was merely a respite from the horrible news I might get? Suddenly, every ache and pain, which I would never have thought twice about in the past, became a possible symptom of HIV progression. As you well know, you can google just about any symptom in conjunction with "HIV" and there will be a connection, somewhere. Then, of course, I started cataloging all the weird things my body has done in the past four years. The two instances of unexplained dermatitis, coupled each time with swollen lymph nodes in the groin (in retrospect, both times I had been in a hot tub...but of course that seemed a less probable cause than HIV, as irrational as I was), an abnormal pap smear, all seemed like conclusive evidence of HIV to me. Then, the swollen lymph nodes. Now, I will say, those were not in my head. I truly had palpable lymph nodes in my neck, arm pits and groin. The funny thing is, after you so kindly responded to my hysterical post, telling me that chances were excellent that my lymph nodes were NOT a symptom of HIV, they started decreasing in size. I imagine that doesn't surprise you, either.
I finally got tested, and, yes, WOOHOO! Just like you said. But it got me thinking...why would I, who have never been prone to irrational fears about my health, have gotten so completely worked up over this? From a strictly medical standpoint, HIV is treatable. Terribly serious, of course, but many people are living reasonably healthy, productive lives with this disease. And yet, at my lowest point, I found myself praying, "please let it be cancer." This knowing that if I had lymphoma, I could easily be dead within the year. Now, how messed up is that? It used to be that AIDS was so frightening because it was a death sentence...but these days, the scariest thing is the thought of being stigmatized, labled as a person with AIDS. I thought, it will kill my parents. What if my sister won't let me touch my niece and nephew any more? What about my job? And the worst thing, of course, what if I've hurt my husband...and either way, will he ever be able to look at me again? (My husband is a patient man...he had no clue what was going on with me, but endured me refusing to have sex for several months.) But you know, and I know, that unless people have been 100% careful EVERY SINGLE TIME, they have put themselves at risk...and in your case, it didn't even have to be about risky behaviors, just bad luck. A negative in my case, and so many others, has nothing to do with not being "that sort of person"...it is sheer luck.
I promised myself that if I were negative (not as bribe to God, only because I figured if I were positive, I might need every penny I have), I would donate $100 to your organization, to start. I will do that as soon as I sign off here. There will be more to come. I am also looking into our local AIDS project, for ways I can volunteer. If there is any way that I can let those who were not as lucky as me know that their lives are not over, I need to do it.
Finally, sir, a huge thank you to you. You must think that most of us who write to you are a bunch of crazies, and hey, I can't argue with that. But you are so patient, and so reasurring, and, when needed, empathetic and knowledgable. I can genuinely say that without those kind words that you addressed to me back in February, I would never have had the courage to face my fear and get tested. You are an inspiration. Wishing yo the longest and hapiest of lives!
Response from Dr. Frascino
First off, WOO-HOO! Excellent news (although as you know, I expected and anticipated nothing less!).
Next, thank you for your comments, which I found to be right on target: "It used to be that AIDS was so frightening, because it was a death sentence . . . but these days, the scariest thing is the thought of being stigmatized, labeled a person with AIDS." Many folks may find that shocking, but I believe it to be absolutely true. Your fears "what if my sister won't let me touch my niece and nephew any more? What about my job? What if I've hurt my husband . . . will he ever be able to look at me again? . . . etc." are very real. People with HIV have experienced discrimination and stigmatization exactly like this (and in some cases, even worse) for over a quarter of a century. Unfortunately our current government and public health policies are doing far too little to change this avoidable and horrific situation. There are still far too many folks praying "please let it be cancer," a very sad commentary on our judgmental and un-Christian-like societal moral values! You are correct: this situation really does "suck" (and not in the good way, I might add).
Finally, thank you for your very generous donation. Your one gift will touch many lives. On their behalf, please accept my heartfelt appreciation.
Be well. Stay well.
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