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HIV Positive and Past 50: Words of Wisdom to My Newly Diagnosed, Younger Self

August 1, 2012

Advice I Would Give My Newly Diagnosed Self

Finding out you're HIV positive can be a scary and confusing experience. But with help and support, it gets better and easier. If only you knew back then the things you know now about HIV. But what if you had a chance to go back in time and advise yourself? We asked people living with HIV in their 50s and beyond, if they could meet themselves from when they were first diagnosed, what advice would they share about growing older with HIV?

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Jane Fowler, 77, North Kansas City, Mo.; Diagnosed in 1991

Jane Fowler, 77, North Kansas City, Mo.; Diagnosed in 1991

I would have told myself to not be in denial, but immediately accept the fact that I had turned up HIV infected, and waste no time in seeking medical and social services assistance, in order to successfully live, and age, with the virus. I would have said: "Study and learn about the disease and understand that it does not have to be a death sentence. Look outside yourself, and consider, if possible, making some kind of contribution to the fight." Of course, I might also have said: "You ninny! Why hadn't you educated yourself about STIs, and how they are spread? You should realize that nobody ever knows the sexual history of anybody else, so be careful, take precautions."

Paul Yabor, 50, Philadelphia, Pa.; Diagnosed in 1990

Paul Yabor, 50, Philadelphia, Pa.; Diagnosed in 1990

Start learning how to be your own doctor , lawyer, activist and most of all best friend. That's not to say that you don't need highly trained dedicated professionals. However it is important that you build a competent knowledge base. So that not only can you tell the difference between the mediocre and the excellent, but by being an informed consumer you will be able to save the life of the person who hopefully you will learn to love and care for the most -- yourself. When we learn to love ourselves the ability to love, advocate and care for others blossoms. And life as a whole becomes that much more fulfilling.

Millicent Foster, 51, Baton Rouge, La.; Diagnosed in 2002

Millicent Foster, 51, Baton Rouge, La.; Diagnosed in 2002

If I could go back in time to when I was first diagnosed I would tell myself, first, don't listen to everything the doctors say because they are human and they make mistakes. They only have medical answers but God has the final say so. Just because I have been diagnosed with what once was a deadly disease doesn't mean that death is sudden. You can live a long productive life if you eat right, exercise, reduce stress and get plenty of rest. HIV doesn't have to stop you from living, but it will help you to change your life for the better. Find a support group, meet people who are facing the same things you may be facing and get active. It's up to you whether you live with HIV or you let HIV control you. Live long and love hard because you only have this one life and it's up to you how you live it.

Dab Garner, 50, Wilton Manors, Fla.; Diagnosed in 1982

Dab Garner, 50, Wilton Manors, Fla.; Diagnosed in 1982

Since I was diagnosed at the very beginning of HIV (when it was still called GRID), I would tell myself, "Don't listen to the doctors when they say you have less than a few weeks to live. You are going to be one of the few lucky ones who live until HIV medications really work. Because you are going to be around much longer than anyone ever thought possible, you should take care of your body as much as possible, since living most of your life with HIV and the medications are going to present their own consequences and health problems in the long term."

I would also tell myself, "Keep giving teddy bears to people to let them know they are loved. What starts as a simple act of compassion and love to your first partners and friends ends up growing into something very powerful, which helps people around the world living with HIV/AIDS. Dab the AIDS Bear helps many people find their own voice as advocates, and inspires them to be active in HIV awareness, education and prevention. Many people will end up traveling the world with their own bear, sharing the bear's message while taking pictures at events, helping to erase stigma one picture at a time. Most important, the bears continue to be a symbol of love, hope and compassion for people living with HIV/AIDS."

Mark S. King, 51, Atlanta, Ga.; Diagnosed in 1985

Mark S. King, 51, Atlanta, Ga.; Diagnosed in 1985

I know you're afraid, Mark. OK, since it's 1985, I imagine you're terrified. I remember that terror and I remember how we wondered who would get sick next, when you would die and if your death would look as horrible as the others. You may not believe me, or you may be trying to have the strength to dare to believe me, but you're going to dodge all of this (most of it, anyway). So go see a movie. Call your mom. Try not to stifle your fear with sex, food and drugs. Oh yeah, about the drugs. Here's a real tip: You're going to live, so take better care of yourself. Sleep. Laugh. And when you're standing in line for a movie in 1991, and your date offers to let you try crystal meth, please don't, okay? There. I just saved you a decade of misery of your own design.

Mark S. King is a longtime, outspoken HIV advocate and blogger for TheBody.com. Watch his videos and read his blog, My Fabulous Disease.

Meta Smith, 56, Baton Rouge, La.; Diagnosed in 2001

Meta Smith, 56, Baton Rouge, La.; Diagnosed in 2001

If I could go back in time and meet myself when I was first diagnosed, I would advise myself to remember that life is the gift that God gave to me, and what I do with it is my gift back to him. I would also advise myself to remember to breathe, to live well, to laugh often and to love a lot. Finally I would remind myself that I belong to a creator that created moons, stars, as well as rainbows; surely he will be there to help me create the best life possible.

David Fawcett, 58, Fort Lauderdale, Fla.; Diagnosed in 1988

David Fawcett, 58, Fort Lauderdale, Fla.; Diagnosed in 1988

Plan on living a long and full life! In the early years, many of us -- with good reason -- saw little future and made short-term decisions when it came to financial planning, careers and personal relationships. Don't let your vision for yourself get small as a result of HIV. Picture all the big things you are going to do with your life!

Ask David your questions at the Substance Use and HIV and Mental Health and HIV forums. You can also read his blog, Riding the Tiger: Life Lessons From an HIV-Positive Therapist.

Helen Turner Goldenberg, 65, Dallas, Texas; Diagnosed in 1984

Helen Turner Goldenberg, 65, Dallas, Texas; Diagnosed in 1984

Helen, break away! Break away from fixed ideas, fear and social determinates of health. Break away from your black family cultural ideas, where you learned very early that family business is family business and you only go to doctors when you are sick and never psychiatrists because we solve our own problems. Break away from faith-based fear, stigma and discrimination, because the old stereotypical profile of HIV (gay white male, drug addict or promiscuous) does not fit.

Helen, you are greater than AIDS! And you must be proactive in the management of your health. Disabuse yourself of faith-based distortions about God's punishment for sin. Develop a true relationship with God based on his written word, then you will know his love, his deeds, his word, seeds and spirit. And with his strength and courage, you can do all things!

Jimmy Mack, 55, Southampton, N.Y.; Diagnosed in 1987

Jimmy Mack, 55, Southampton, N.Y.; Diagnosed in 1987

Well, hindsight is always 20/20 and I know now I had to follow the path I chose in order to eventually find spirituality, a High Power and myself. Helen Keller once said: "I thank God for my handicaps, for, through them, I have found myself, my work, and my God." If I change "handicaps" to "diseases" then I, too, can see that the disease of HIV brought out my other disease of alcoholism/addiction, and brought me to me knees where I had nowhere else to turn but to a "God of my understanding" who was always there and always will be. So what would I tell myself at 29 after testing HIV positive? Maybe the same thing that is told to young gay people: "It gets better"; or maybe just simply: "Have faith, it's going to be all right."




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