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Personal Perspectives

How does taking HIV medications change your life? What are the issues you might have to grapple with as you start HIV treatment? Read firsthand accounts and learn valuable advice from HIV-positive people who are on meds themselves, as well as knowledgeable health care professionals who have been counseling HIVers for years about taking HIV medications.

First-Person Stories | Tips and Advice


First-Person Stories


Treatment Cascade

When Did You Start HIV Meds? Stories Spanning Several Decades

In the current era of HIV treatment that's both effective and tolerable, people's stories of starting HIV meds have changed considerably. HIV treatment may come with fewer side effects and the assurance that, if all else goes well, those meds will be a person's companion for a long, full life. But the treatment cascade reminds us that, in the United States, only a third of people living with HIV have been prescribed HIV meds.

One thing is certain: Whether you took your first fistful of pills in the late 1980s or began last week with one of several single-pill regimens, starting HIV meds is a life-changing event. Many of our bloggers and community members have told their stories of starting treatment; here's what some of them had to say about it.

Marvin Freeman

Do As I Say, Not As I Do
By Marvin Freeman

It seemed to me that people I knew who took HIV meds went through many physical changes -- I saw their bodies being disfigured, and many died. I would hear the war stories, and they were not good reports. I would see people in my support groups who weren't doing too well. Even though I was using street drugs, I was more afraid of the HIV drugs. I thought if I took them, things might show up two years down the line -- like I might end up getting cancer from them. It was all fear-based. It was contempt prior to investigation.

Aaron Laxton

My HIV Journey: Videos of My First Months on HIV Meds, and Where I Am Now
By Aaron Laxton

Bob Leahy

Changing My Mind on Treatment as Prevention
By Bob Leahy

One hundred and eighty degree turns happen in a variety of ways. Sometimes we seize the steering wheel of our lives and in one fell swoop travel along an opposite path.† Other times, we take the turn slowly, one degree at a time, gradually realizing the path we are on leads nowhere and we need to go off in radically new directions. Thatís been the case with my realizing that most of my once fervently held objections to treatment as prevention, in 2013, make much less sense than they once did.

Ed Perlmutter

My Shifting Seat on the HIV Merry-Go-Round
By Ed Perlmutter

Regarding HIV clinical care, my friend James always says, "stay close to the center of the merry-go-round." And itís great advice. Stay close to the center and gravity keeps you balanced and secure, in the right spot, even though you're spinning fast, round and round. Shift out from the center and all bets are off. For the past six and one-half years, Iíve had my ass firmly planted at the center of the merry-go-round, right where I need to be. And Iíve been holding onto that spot for dear life, and there Iíve received the best HIV clinical care I could possibly imagine.

Frankie Ninja

Cocktail Anyone? When to Start HIV Meds ... or Not
By Frankie Ninja

"'Should I start my meds?' 'When or How soon?' 'Which one(s) are best for me?'

"The answers to these questions and many more vary from person to person. They depend on that person's psychology, physiology, health, and the advice of their HIV specialist, as well as the conscious decision by the individual about whether to begin or wait.

"The answers are not to be taken lightly, and neither should the decisions, as both are life-changing events. Once you start your meds, it is not advisable to stop. EVER. I started mine on August 11, 2008 at 11 p.m."

Orie

Video: First-Person Stories About People Starting HIV Treatment
From The Positive Project

Seven HIVers sit in front of the camera to talk candidly about what went into each of their decisions to start HIV meds, from health complications to doctor advice to participating in a clinical trial.

Khafre Abif

Be the Chair of Your Own Board: Advice Before Starting Treatment
By Khafre Abif

"If I could go back in time to the moment before I started HIV treatment, what piece of advice would I give myself?" I would advise myself to approach my decision the exact same way. I didn't begin treatment until seven or eight years after my diagnosis. As a librarian I was heavy into research and worked to find out as much as I could about the current treatments available. I read websites like TheBody.com, and read POZ magazine from cover to cover.

Maria T. Mejia

My Story With Medication
A Video Blog
By Maria T. Mejia

I've been HIV positive for 20 years, 10 of them without any HIV meds, and for the last 10 years I have been on HIV medication. If I could go back 20 years, I wouldn't change a thing. I really believe (and this is only my opinion) that not taking the high dosages of AZT (Retrovir, zidovudine) that were offered 20 years ago saved my life.

Lillibeth Gonzalez

When I Started HIV Meds: Step by Step on a Difficult Road
By Lillibeth Gonzalez

I was diagnosed with HIV in July 1992. Before starting HIV treatment, my T cells were 868 and I was in great shape, but I was angry at myself for trusting my husband and not wearing protection. I thought I was going to die, and I looked at my life from a different point of view. I started to hang out and drink. I didn't keep a good health regimen. That was the most ignorant decision I ever made. Due to that choice, my T cells went down to 0. I got tuberculosis, neuropathy, wasting syndrome, and had Pneumocystis pneumonia (PCP) four times.

Robert Breining

HIV Meds and Hospital Beds
By Robert Breining

I wanted my third blog to be about my experience starting HIV/AIDS medication. When I was first diagnosed I was told time and time again that my counts were always good and I didn't need to start taking medication right away. This helped feed the denial of my HIV status. Not having to take medicine on a daily basis and keeping busy made it easy to sweep my diagnosis under the rug.

fogcityjohn

A Hundred Indecisions: A Tale of Starting Meds
By fogcityjohn

I tend to be somewhat indecisive by nature. When making any kind of important decision, I try my best to gather all of the relevant facts so that the final decision I make will be a well-informed one. I seek to exhaust all avenues of inquiry that may bear on the decision before I make it. As you can imagine, this often leads to a long, drawn-out process in which I will go back and forth several times before making up my mind and settling on what I should do.

Philip D.

Little Soldiers and Superheroes
By Philip D.

March 25, 2008. At the time, I called it "the first day of the rest of my life." My medical chart refers to it as the day I started anti-retroviral therapy. Either way, it's an anniversary I will certainly never forget. As I look forward to a regimen change in a few weeks, I can't help but feel a bit sentimental.

Read more personal accounts of people taking HIV/AIDS treatment.


Tips and Advice


Advice on Starting HIV Treatment From People Who've Been There

Advice on Starting HIV Treatment From People Who've Been There

Starting HIV meds, or thinking about taking this step? We reached out to a group of those most in the know about the intricacies of starting treatment -- HIV-positive people who've made the decision to start themselves -- and asked: "If you could go back in time to the moment before you started HIV treatment, what advice would you give yourself?"

Adjusting to Life on HIV Treatment: Tips From Experts

Adjusting to Life on HIV Treatment: Tips From Experts

We asked a range of knowledgeable HIV doctors, nurses, treatment advocates and other HIV care providers to answer this question: "What key piece of advice do you have for HIV-positive people who have just started treatment and are adjusting to life on HIV meds?"




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