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Living Longer and Healthier with HIV: Three HIV-Positive People Share Their Advice

January 1997

IT'S BEEN SEVERAL months since the Eleventh International Conference on AIDS ended. While the conference consisted primarily of medically technical presentations, there were a few sessions specifically intended for those of us who are actually living with the disease. One, "Living Longer and Healthier with HIV" was filled to capacity, with all of us in attendance soaking up the information like dried-up sponges. After listening to numerous dry and minutely technical presentations by researchers and doctors, I find that people who are living with HIV are always more direct, insightful and personal, while providing useful advice for dealing with HIV.

Meet the Experts

Moderated by Tam McAulay of Canada, "Living Longer & Healthier with HIV" fell under the category titled "Meet the Experts." The panel consisted of three HIV "experts," meaning three HIV positive people. They were as diverse as three people could possibly be.

The first person to speak was Cheryl Brown. Her warm and humorous presentation was called "Activism vs. Self-Care." Cheryl is an activist. After awhile, she realized she was getting burnt out and overwhelmed. A person doesn't have to be an activist to get burnt out by AIDS. All of us often feel overwhelmed by the mental and physical difficulties in dealing with this disease. Cheryl realized that she needed to develop several methods to deal with these problems. These are her methods and her recommendations.

  1. Have an "AIDS-Free Zone." This is a place where you never think about or deal with AIDS in anyway. It means, no reading about it, no writing about it and no talking about it. The place could be your bedroom, a sanctuary in nature, or even your bathroom.
  2. Have an "AIDS-Free Day." Do it once a week, or once a month, but do it on a regular basis. On this day you eat whatever you want, do whatever you want, take only the Western medications which can't be skipped, but nothing else, and screen your calls. No thinking about or talking about AIDS with anyone.
  3. Have "AIDS-Free Friends." Even a public activist like Cheryl has managed to keep her HIV status from some people. This is so she can feel "normal" and think only about "normal, non-HIV related problems" like, what to order for lunch. Cheryl admits that one day these friends might be upset that she didn't confide in them, but hopes they will understand when she explains why. (We don't want all of our friends inquiring after our health at the start of every conversation.)
  4. Try to keep a Positive Mental Attitude. Remember...
    • Denial can be healthy.
    • Keep your sense of humor.
    • Read the Roxy Ventola article "Hit by a Bus." The women from WORLD were giving out reprints of this article at the conference. Roxy wrote "Hit by a Bus" for Women Alive and we've reprinted it since. Cheryl felt this is the funniest HIV article ever written, and so do we.
    • Have goals and go after them.

Zambia

The second person to speak was Winstone Zulu from Zambia. Winstone's sensitive presentation began with him telling us about the lack of medical treatments in Zambia. The first time he ever saw 3TC was at this conference when someone from the west showed him a pill. The medications we in the west all take for granted are not even an option in Zambia. Winstone's advice was very basic and practical. Advice which most everyone can put into effect.
  1. Good nutrition: It is very important for people with HIV to eat a good, balanced diet.
  2. Good hygiene: Wash your hands a lot, to prevent contracting other illnesses.
  3. Safe sex: Use condoms to prevent reinfection and other STD's.
  4. Go to a doctor as soon as you feel anything is wrong. Don't worry about being considered an alarmist. It's always better to find out what's wrong quickly. The sooner you get treatment, the better.
  5. Good attitude: Winstone's attitude is "HIV won't kill me today. Maybe tomorrow, but not today." Live life fully, today.
  6. Shit happens: There are things in life which we can't understand and can't explain. Some people die from HIV, some don't. Shit happens. With life, you can run, but you can't hide.

The Third Expert

The third presenter was Eric Sawyer. Eric is a member of Act Up/New York, and a very dedicated and vocal activist for all people living with HIV. Eric's long-time experience with HIV has given him numerous insights.
  1. Support. Develop a support network with other HIV positive people. If you can't for some reason, at least have a phone relation with one of the many hot-lines for HIV positive people. ( For example, the Women Alive hot line: 1.800.554.4876 is a great way to develop supportive relationships with other positive women and still remain completely anonymous. )
  2. Self Disclosure: Find out who you are in this life, and love yourself.
  3. Victim Mentality is Deadly: If you accept the role of victim, you can literally will yourself to death.
  4. Willingness to change your life: Find out what is important to you, and focus on those things. Eric's are love, friends and community contribution.
  5. Help change the collective consciousness of mankind from selfishness to social responsibility. Access to treatment is extremely limited in most of the world. Human rights violations must be addressed, and underdeveloped countries need our help.
  6. Be an activist: This helps to get stress and anger out, and channel it in a helpful way. And never/ be afraid to cry.
  7. Manage your own health: Insist on a good relationship with your doctor. Remember, they are supposed to help you, and if you don't like him or her, then find a new doctor.
  8. Genetic make-up: Much of your response to HIV has to do with your own physiology. Much of this is beyond our individual control. (See above under "Shit Happens")
  9. Keep your moral and spiritual values intact: Live your life by The Golden Rule, "Do onto others as you would have them do onto you."

These three dynamic "expert" presenters imparted words of wisdom and advice which we can all immediately implement into our lives. Their individual responses to HIV has helped each of them to live a long time with HIV. Hopefully, their wisdom can guide all of us to also living long and fulfilling lives.




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