Both Sides of the Pill Bottle
Sometimes the numbers just don't add up. You're sitting there in an exam room and everyone is telling you how wonderful you're doing. Your numbers are just great! Your T-cells are way up and your viral load is way down. What could be better? The answer is -- you. In this high tech medical world of measuring and monitoring every branch of DNA, viral particles, and countless other laboratory parameters, sometimes something very strange happens. The patient (and that would be you and me) gets lost in the lab limbo tango. What makes matters worse is that people with HIV sometimes jump right into this dance with glee.
Look, good numbers are good numbers, but they are, after all, just numbers. It isn't uncommon for people with high T-cell counts and undetectable viral loads not to feel so great, while those with low counts and high viral loads feel just fine. Grand even.
It's a very hard disconnect for lots of people with HIV and clinicians to make. There are many reasons why symptoms appear regardless of your counts. However, one of the main reasons is that treatment and disease side effects are poorly handled. Sometimes we feel like we have to just tolerate it.
Okay, time to face the music. As a person with HIV and an HIV primary care nurse practitioner, I can jump with great skill from one side of the exam table to the other. But I'm going to let you in on a little secret. So listen up and lean in a little closer. I thought I was "doctor nurse smarty-pants" -- doing outstanding HIV medicine before I tested positive myself. I would often hear the Mighty Mouse theme song ring in my head: "Here I am to save the day ...!" I was smart, compassionate, dedicated beyond all expectations, and down right foolish. I learned more about being HIV-positive in the split second after getting my test results than in ten years of graduate school.
HIV was no longer an abstract concept. I was now both patient and clinician.
I started to see things differently. I realized that many clinicians were fixated on the numbers. Monkeys could be flying out of my butt, and all that mattered was my numbers. My concerns about fatigue, pain, my career, and family were sometimes seen as less important.
Take fatigue, for example. Fatigue is estimated to happen to 50% to 80% of people with HIV. It can happen throughout all stages of HIV infection and sometimes can knock you down. Even if your antiretroviral therapy is pulverizing your virus, you can still experience fatigue because of anemia, hormonal imbalances, depression and anxiety, lack of physical activity, and on and on.
When we talk to our healthcare team, we need to make it clear how fatigue -- or any symptom for that matter -- is affecting us. Everyone gets tired, but not everyone gets HIV-related fatigue. So if it's keeping you in the house and out of life, your healthcare providers need to know that, and they need to figure out what's wrong.
Correcting anemia, improving levels of testosterone, treating depression, and developing an exercise plan are all good solutions. But sometimes the cause of the fatigue remains vague. However, studies have shown that certain psych drugs, such as Ritalin and Cylert, can really help with HIV-related fatigue. They may perk you up and get you going again. Remember that the numbers don't tell the whole story.
Richard Ferri lives in Provincetown, MA and is managing editor of NUMEDX and the author of the novel Confessions of a Male Nurse to be published by Haworth Press in 2005.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.