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Delayed grief...
Jun 2, 2008

I knew when I was infected (a 3 month period) I tested positive soon after. It was no surprise...partially because I am disabled and have alot of other illnesses etc. I am 'used' to being told bad news or getting 'just another diagnosis to add to the mix'. I really just took it in stride. added to the mix of what else...

Now 7 yrs later and being tested for drug resistance a few days ago and knowing in 3 weeks whether I should finally be put on meds or not at this time...since I have never been on meds before...suddenly I am scared, overwhelmed, feeling my mortality. I am a 56 yr old divorced disabled woman and I am finding that I am having to face this as more then 'just another diagnosis,' but one that determines my quality of life as to meds/side effects, adherance or I'll die sooner...blahty blah...

My family sticks their head in the sand...'get over it, it's not the end of the world' but no practical strength and hope. I guess it is that I am finally having to face square on exactly what this disease has done to my body and now to my psychological balance. Yes, I am feeling sorry for myself.

What can I do to help me go through this delayed grieving process?

Thank you for your advice and help!

God Bless you,

Response from Dr. Frascino

Hi,

During the course of cohabitating with HIV there are several milestones. One, of course, is the initial diagnosis. Being told you are HIV positive for the first time is a life-changing event none of us will ever forget. Another milestone is the initiation of antiretroviral therapy. It holds potential psychological power, because to many it means now we are "sick enough" to warrant these potent, potentially toxic medications. For some this is the point where HIV suddenly becomes real, because you must be reminded of it with each handful of antiretrovirals. This psychological punch may have developed because we have had various guidelines as to when to begin therapy and we have all heard (or witnessed) the potential side effects of these drugs. Consequently your "delayed grief" really isn't all that uncommon and certainly can be explained.

Interestingly other HIVers are often eager to begin treatment. They feel they want to do something to combat the virus as soon as possible, despite any potential medication risks. This feeling can also be explained by the fact that for almost all other infectious illnesses, we begin treatment as soon as the diagnosis is made. If we get pneumonia, for example, we don't wait until we can hardly breathe before beginning antibiotics. Or if we get gonorrhea, we begin treatment as soon as the diagnosis is made and don't wait until it feels like we are "pissing razor blades." So the urge to treat HIV as soon as one knows he or she is HIV infected is, on many levels, logical. If we had potent, effective, nontoxic and/or curative anti-HIV treatments, we would indeed begin treatment as soon as an HIV-positive diagnosis was made. But we don't have a cure and HIV medications can be difficult to tolerate. So we continually must balance risk of therapy against potential benefits. As new medications become available and we learn more about HIV pathogenesis, the guidelines for when to start have been moving targets. What I can report is that HIVers beginning treatment in 2008 have far better (and much less toxic) options than those of us who began treatment a decade ago. On many levels there is reason for optimism that your HIV medications will be well tolerated, highly effective and relatively easy to take. Despite this, however, living with HIV certainly has its challenges, both physical and psychological. A strong support system is highly recommended. If you don't have this with family and close friends, it's time you built an HIV-support team that you can rely on. Talk to your HIV specialist. He may have recommendations for support groups. Also, if indeed you are becoming depressed, one-on-one counseling can be extremely beneficial. I wouldn't characterize your feelings as "delayed grieving," but rather as situational depression. I'm confident that once you adjust to your new reality, and with the appropriate support, your "strive to thrive" will return.

I'm here if you need me. Let's get through this together, OK?

Dr. Bob



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