This Month in HIV: Tips and Tricks for Coping With HIV/AIDS
A Psychologist and Three HIV-Positive People Share Their Wisdom
Sherri Lewis: I'm in my 50s, and a lot is different in your 50s -- not just HIV, but a lot of things, not just hormonally, but even dating, and what's available, and who wants to deal with this now.
So that's a huge cofactor. Not just when, what years were you diagnosed, but how old were you when you were diagnosed? Where were you, in terms of your life? And that's made a huge difference for me.
I think a lot of people just diagnosed with HIV need to hear that, even though they feel that their diagnosis will be the hardest part of their journey living with HIV. As a person with HIV, they face other particular challenges like: dating, which we just discussed; starting treatment, which is difficult; getting tired of treatment; and dealing with the constant stigma. Dr. Remien, do you have a list of what people should be aware of, or realize, in their life going forward as an HIV-positive person?
Dr. Robert Remien: I think you're already starting to list the appropriate ones. As we're hearing throughout this conversation, there are lifelong challenges; it's not just dealing with the initial diagnosis. A lot of these things don't go away. But we're also hearing there can be really good quality of life, and love in people's lives.
But there are particular points that I think people find particularly emotionally challenging, such as having physical symptoms, having an illness. Whether the illness be HIV related or not, emotionally the feeling is, wow. What is this? Is this my spiral downward? So there's just that emotional fear whenever anyone gets sick.
It's emotionally challenging when people go for their blood work, or they see, all of a sudden, a very high viral load that they didn't have before, or they see a change in their CD4. People shouldn't panic and freak out at just one viral load change, or one CD4 change. You have to look at a pattern over time. But that's an emotionally challenging part.
When people have to initiate medication, they feel like they have entered a new realm of dealing with HIV. Coping with chronic medications in the long term, and the side effects, whether they be the short-term or long-term side effects, there are challenges there. So, constantly taking care of yourself, and adhering to care, and adhering to treatments.
As we have been talking about: Stigma and disclosure and discrimination, those are not just a one-time thing. People might deal with that 20 years into their infection in a new environment, or a new place.
So I think all of these are examples where people may need some extra support, whether that be through a counselor, through a friend, from a group, through their faith. But these things do happen over time.
Larry Bryant: How about adhering to life?
Sherri Lewis: And the rising demographic of aging in HIV?
"We have to remind people when they're newly diagnosed -- after going through the initial shock and trauma that inevitably is going to hit you one way or another -- to remember to hold on to any part of your life that you had originally. Your life doesn't change. You're not disqualified from your dreams, and your passions, just because you are diagnosed HIV positive."
-- Larry Bryant
Dr. Robert Remien: Yes. Now you've got everything else that goes on with aging, as Sherri was saying.
Sherri Lewis: You know, "I'm so tired of having to deal with ... I was living with HIV for over 22 years. Now I have to deal with bone density, hormone replacement. How does this affect my HIV meds?" There's not a heck of a lot of information about that yet, because we didn't have the luxury of thinking about aging with HIV. The good news today is, we are aging with HIV today. And that's the good news. And it has a whole bunch of other things. But we get to hopefully bring some information with how are we living with this physically, mentally, and emotionally. And hopefully, you have a spiritual connection. Because I know that's been giving me the foundation of support I've needed all these years.
Larry Bryant: Dr. Remien, when you talk about adherence, I mean, it's just adhering to life. We think about the number of people that we have lost to HIV and AIDS, to this epidemic, and we automatically ... we talk about teachers and lawyers and doctors and artists and mothers and brothers and family members and actors, and on, down the line.
We have lost people who have died, who have lost the battle of fighting the disease. But we have also lost a lot of people whose life emotionally ended when their diagnosis came. They stopped teaching. They automatically subtract themselves from their passions, from their dreams.
We have to remind people when they're newly diagnosed -- after going through the initial shock and trauma that inevitably is going to hit you one way or another -- to remember to hold on to any part of your life that you had originally. Your life doesn't change. You're not disqualified from your dreams, and your passions, just because you are diagnosed HIV positive. I think that's one thing that we want to instill in people, whether you've been diagnosed a month ago, or whether you have been positive for over two decades. I think, to remember those dreams and those skills, and don't subtract yourself.
It's hard enough fighting the stigma and discrimination that exists outside of our own beings. But to add another ton and a half of our own weight to that is much more difficult to overcome.
Michael McColly: That's beautifully said. You know, it was after 10 years that I decided to go to several other countries and write a book about how other people in South Africa and India and Thailand, and even here in the United States, have, as Larry said, shut themselves down -- and that, to me, is still terrifying. Because I wrestle with it every day.
But to find whatever engine keeps you going, you just have got to keep reinventing it. But that's what everybody does in life, anyway. You find that out. My mother tells me that all the time, and she's dealing with Alzheimer's now. And there's a new thing: We have got to keep finding the strength somehow.
So, to think that this is a special sort of thing that's only happened to us, you have to keep fighting against that, and by challenging yourself in new ways. You have to wake up each day and go after a new thing. And that can be difficult. But we're all dealing with that in everyday life. And we do have strength. We just have to keep encouraging ourselves.
I'm afraid we're out of time. So, thank you very much, everybody. Thank you, Dr. Remien. Thank you Larry, Sherri and Michael, for taking the time to share your thoughts. I think this will be a very inspiring podcast.
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This article was provided by TheBody. It is a part of the publication This Month in HIV.
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