Words to Live By

Advice from a formerly incarcerated person living with HIV

From PHN Issue 37, Summer 2018

1. Take care of yourself. Make your health your top priority. Ask for what you think you need. Don’t wait for someone to take care of you. Advocating for your health is a constant job, especially in prison or jail.

2. Become educated about the virus, your medical condition, medical treatments, and prevention. Find out where you can get HIV-related information while you’re in prison and get on that mailing list. If one place doesn’t write you back, write them again, but write other places as well. See if the prison library has any good information.

3. Join a prison support group if there is one. If not, see if it’s possible to start one. Find someone else who is living with HIV/ AIDS in prison who you can trust to talk to.

4. Get to know the doctor or nurse who knows the most about HIV where you are. Ask a lot of questions. Don’t take medications if you don’t know why you’re taking them. Ask about side effects, how your medications interact, and what the medication is supposed to do for you. Make sure that you don’t run the risk of developing resistance to your treatment by missing doses. Ask the doctor or nurse to explain any words that you do not understand. Bring in articles you have that may be helpful.

5. Don’t miss any dosages. See if there is any way you can keep your meds in your cell. Train yourself to stick to the schedule, no matter how hard that is to do in prison or jail. Drinking or using drugs may make you miss doses, but it is important to stick to the schedule. Also, most of the HIV medication is safe to take while using if you’re not ready to stop using. The important thing is to keep the dose schedule.

6. Don’t wait to deal with having the virus. Get tested, and if you are HIV positive, search for any information that you can get your hands on.

7. Before you are released, try to make arrangements to see an HIV doctor on the outside as soon as you get out. Try to get the prison/ jail medical department to mail your records to your new doctor, or at least write up a medical summary. If you are being released from a Pennsylvania State Correctional Institution, make sure you are given a 30-day supply of your medication and your medical summary from the medical department. If you can’t get your medication or make an appointment with a HIV doctor when you’re discharged, go to the emergency room right away.

8. Don’t take “No” for an answer. Be persistent, but not too persistent. Remember that you can get more if you are nice to the people that you need to be nice to. Use proper prison channels to complain.

9. Don’t get anyone else infected. Learn how to prevent HIV and only do the things that are safe.

10. Keep a positive attitude. Having HIV doesn’t mean you are going to get sick or die in prison or jail. Make sure you follow up on all test results. Sometimes the results are not forthcoming if you don’t pursue them.

11. People around you, either COs or inmates, may not understand what you are dealing with. Don’t let them negatively affect you.

12. After you get out, there are places that can help you get back on your feet, but it will require hard work on your part.

13. Find support while inside. The law might be more on your side than you realize. Use the grievance system. Explore the prison law library. Use it well and use it your advantage.