I am trying to hang in there but dealing with these meds is quite difficult and sometimes I don’t know what to do and [I am] feeling alone. I admire the things you do and you seem, like many others, to at least enjoy some “normal” quality of life. I feel so drugged in the morning and can hardly get out of bed. Hmm, it’s like a nightmare worse than Elm Street. LOL. I see why some people give up on [drug regimens], but it’s like being between a rock and a hard place. If you do, it’s like hell, and, if you don’t, it’s probably straight to hell! LOL. (I am trying to make light of my situation.) Anyway, I hope to hear from you and that there might be a bright side. Thanks.
First of all, thank you so much for the compliment. Second, take it easy on yourself—the more stress that you put on yourself the more the virus can disrupt your system and even your way of thinking. I suggest doing something to lower your stress levels. Know that this is just a hill that we, as HIV-positive people, have to climb. No matter what happens, keep a positive mindset. Third, the medications work with everyone’s system a little differently. At first I was on Truvada, Norvir, and Reyataz. It was fine at first, but then it started making my eyes yellow and my skin got a little darker. It literally gave me jaundice and it hurt my self-esteem as well. The meds do make some of us tired, but you must tell your doctor this. There are some things that your doctor can do to help you in this matter. He or she might put you on a different HIV medication that might help you with your fatigue. Also, what I do is to take vitamins that help me with my energy levels, not to mention my coffee-a-day regimen. LOL. Fourth, do not give up on your medications. I know it seems like they are not helping, but they are. They are making sure that your body keeps the HIV in check. I don’t know what medications you are on, but I, too, had the same feeling mentally and physically when I first started on my HIV regimen.
Now, about feeling alone. I have to ask if there are any support groups around you in Jamaica. I have found out that having someone near you that might be going through the same things you are does help. You have the ability to reach out to them when you are feeling low or having troubles with the medications that you are on. I think you should do some research on finding a group that does deal with HIV openly and head-on so that you are not susceptible to low self-esteem and are able to take more control over what you might think is uncontrollable—your life.
I don’t know if I can handle this anymore, but I don’t want to take my medications. Each day I get up and wonder if it will be my last. I feel so weak, but some of the government officials in my country have told me that HIV isn’t a real disease. What should I do?
—Abdul, South Africa
Go see a doctor who has the mentality that HIV is a disease and can be controlled. I don’t know if a doctor is available for you to see quickly, but you should do some research and find one. HIV medications have saved many lives, including my own. I had a friend named Joshua who stopped taking his meds. I saw him early this year and he looked a little skinnier and was pale. His family buried him last month. He was an ex-roommate of mine and I loved him dearly.
The more we take control of our medical health, the better we are able to combat the disease. I don’t know if HIV medications are available to you, but I know that they have made my life worth living—for my husband, my friends, my family and, most of all, me.
Justin B. Terry-Smith has been fighting the good fight since 1999. He’s garnered recognition and awards for his work, but he’s more concerned about looking for new ways to transform society for the better than resting on his laurels. He started up in gay rights and HIV activism in 2005, published an HIV-themed children’s book, I Have A Secret (Creative House Press) in 2011, and created his own award-winning video blog called, “Justin’s HIV Journal”: justinshivjournal.blogspot.com. Now, with this column, Justin has found a way to give voice to the issues that people write to him about. Visit his main Web site at www.justinbsmith.com. He welcomes your questions at [email protected]