Disclosure

By God's grace we see people with HIV living longer, and living better than ever before.

Thanks to access to life-extending medications, many are living well beyond what we would have expected even as little as 5 years ago.

Since we have started a testing and counselling centre, we are also seeing a different set of people as well. Till now Jeevan Sahara Kendra was working primarily with the very ill - and with their survivors. Now we are coming into contact with people who are earlier in their HIV disease. The sick welcomed home-visits. Those who recently found out about their HIV - and are not very sick - often do not want to be met at home. There is too much at stake for them. Loss of face can mean loss of everything if others find out they have HIV.

Most put off sharing about their HIV status with others for another day. Coping by denying / procrastination.

Despite the medical advances - we still see the deep roots of fear and loathing around HIV.

How to over come this? Our media has had campaigns - our film stars have showed up at 'AIDS Prevention concerts'. Everyone seems to know at least a little about HIV. But at the same time the deep fear and visceral hostility and apathy continue.

A recent contact who sadly succumbed to a TB infection last month is a case in point. After his untimely death almost none of the relatives came to his funeral. Some came wearing masks (this was prior to the main swine-flu scare in Mumbai). The family as so grateful when our team visited the day after the death and spent time talking and listening to the remaining members.

With so much fear - is it even possible to share one's HIV status - especially if it is HIV positive?

We were challenged last month by Bobby Zachariah - who recently moved on after having served with the Salvation Army's AIDS programmes for the past 12 years. His point was that true community-based care will only happen when we start including the neighbours in care. And this only happens with disclosure. When people with HIV tell others about their status.

Our dear friend John Forbes challenged us on this at a retreat that he lead for Positive Friends of Faith. Quoting Psalm 51.6, he reminded us that God desires truth in the inner parts. As a person living with HIV - and thriving - John helped us see that understanding our status and coming to terms with the reality of it is essential for any real change and transformation to take place.

Its just so hard.

So many whom we are meeting these days want treatment. They just don't want others to know. Be it fear. Be it guilt. Men are not telling their wives that they are HIV positive. Women are not telling their partners that they have HIV. How to move forward? How to help our friends take a humble but active role in confronting their own HIV status?

And can we even move a step further?

Could we see disclosure as not a thing to fear, but a tool to empower? A way of stating clearly and participating fully in the community - even if there seems precious little community around? Could we expect God to help individuals own up to their loved ones? Can we see relatives and friends to support and forgive and encourage so that people with HIV can take the next step and live lives in the open instead of in hiding?

Its strange that though we have been involved with these issues so long, that we are still working on the essentials, the basics.

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I am due to lead a JSK staff counselling study on the topic of Disclosure on Friday. Prayers and suggestions most appreciated.

picture from the www - not known persons to us - for illustration only