By John Bell (formerly incarcerated) and Laura McTighe
From PHN Issue 4, August 2004
We teach a class for brothers and sisters with HIV that are just getting out of jail and prison. The class is primarily about dealing with life on the out- side. But we also spend a lot of time talking about the pain people suffered while locked up—especially how frequently people had to choose between getting the care they needed for their health and keeping quiet so that no one in their facility would find out their HIV status.
We are writing this article for those of you who are dealing with this issue on the inside now. We do not have answers for you, but there are some things that we want you to know.
It’s Your Call.
There is no protocol and no correct stance on sharing your health status in jail. It is up to you. In prison, being able to make decisions about when, how and to whom you disclose your status is hard if not impossible. Pretty much anything you can do to take care of yourself breaks your confidentiality as a person living with HIV.
Once people know your status in your facility, there is no getting away from the looks, the stares, the comments like “HIV bitch” or “He’s got that hot shit.” Before you think about getting medical care or telling anyone your status, you need to be able to say, “If you have a problem with me being HIV positive, I sincerely hope you get over it” …and mean it.
People living with HIV have seen a lot of people pass before them—neighbors that dropped off without a trace, friends they watched get sick, family members they cared for at the end stages.
We know that these memories weigh heavily on you—that every time you think about those people who passed on before you, you feel terrified about your own health, about when you will get sick. And, at the same time, it is these memories and this same fear that make you think about reaching out for help and for medical care.
You have probably heard that HIV weakens the immune system so your body cannot fight off infections on its own. But have you heard that your immune system is very strong, and for a long time it wins out against HIV? On average, it takes 10 years before HIV can run through your immune system enough for you to even start feeling symptoms. And if you take care of yourself, you can make that time even longer.
If You Get Sick.
The most important things you can do are to 1. know your body and 2. keep an eye out for changes in your health. Things to watch for: herpes blisters and cold sores that do not go away, thrush that makes your mouth and throat dry and whitish, or pneumonia that makes you really tired and short of breath. Women should also watch for repeated yeast infections.
There are meds you can take to fight off infections like these, and there are also anti-HIV meds you can take to knock out HIV, so your immune system can get strong again and fight off infections on its own. You should be able to get these meds at your facility.
But in prison, it is rarely possible to just go to the clinic, get your meds and keep your health status private. If you go to the medical staff about your HIV, 9 times out of 10 someone else is going to find out. A correctional officer might overhear you talking with the doctor, or there might be a scheduled clinic time for the infectious dis- ease doctor at your facility so all inmates know that is the day for people with HIV, or other inmates might see or hear the meds you take in med lines. Whatever the case, no facility protects your confidentiality 100%.
Whether you decide to seek medical care or refuse it, your life is on the line—from the HIV or from the dis- crimination you face in your facility. This is not an easy or fair choice.
There are many people in prison who have stood up to the abuse that people with HIV face, and are getting medical care. We applaud you for your bravery, and know that you have served as inspirations for people in your facilities who are not open about their HIV.
But there are many more people getting sick behind bars, because they have refused treatment. We stand along side you and offer our support in dealing with this difficult decision.
Whatever decision you make, please keep yourself safe on the inside. You are too valuable, and there is too much work for you to do when you get out.
If you are too afraid to tell people your health status, don’t. If you are afraid to get medical care because others will find out your status, don’t. If you are going to seek medical care, make sure you have someone you can lean on for support—even if it is someone you write to on the outside. If you are going to seek medical care only if you get sick, start preparing now. It will be even harder to deal with the mental and emotional pain from stigma if your body is also weak.
Health Without Meds.
If you choose to not get medical care while you are locked up, take steps to keep yourself healthy.
Bottom line: if germs cannot get inside your body, they cannot make you sick. Shower regularly, wash your hands before you eat, and keep cuts and scrapes clean.
Also, exercise and stress reduction help to keep your immune system strong. Doing push-up, sit-ups and playing sports will all strengthen your body, plus exercise helps you let out tension. And, while it is hard to really get rid of stress on the inside, if you can find five minutes each day to slow down and take some deep breaths, you will feel the difference.
We Are Here.
We are waiting for you on the outside. There are advocates across the country who will make sure that you get the services that you need, and that you have a community of people who are HIV positive and recently released to help support you. You are not alone.