Bartemeous of the Bible cried out louder and louder as his relatives and friends tried to stop him from crying out to Jesus. To them his cries were a source of embarrassment and shame. When one is in a dire situation friends are few but when one is enjoying good times friends are many.
Fortunately for Bartimeous Jesus heard his cries and he was saved. Similarly those of us who have decided to disclose our HIV positive status are sometimes ridiculed, told to keep quiet but some have decided to continue spreading the message of hope and resilience without fear and God has heard and made us healthy and here we are telling our story of salvation to everyone who cares to listen.
The coming in of HIV and AIDS brought with it many challenges to both the infected and the affected. HIV came with shame, humiliation, loss of dignity, stigma and discrimination which led to many people decide to suffer and die in silence. At a time we are saying HIV/AIDS is no longer as dangerous a threat to life as it was a decade or two ago there are some truths that are only known by us people living with HIV which are not even known or acknowledged by health authorities. There is need therefore to listen to those living with HIV so as to combine the knowledge of the two sides to come up with policies that are beneficial to all.
We know the fear, the embarrassment, the self denial and other negative feelings endured by those of us living with HIV. We are the people using HIV and AIDS drugs and we know how they work and how we feel after skipping a day or two’s dose of the life saving ARV as opposed to strict adherence.
We are not experts on HIV/AIDS in the medical sense but we are experts in living with HIV and hence very important cogs in the HIV response matrix .Our world respects more, knowledge and information gathered by what are called experts as opposed to that coming from experience of those living and experiencing the reality.
During the more than 30 years I have lived with HIV knowingly I have gained lots of practical knowledge on how to live with HIV+ and can therefore confidently call myself an expert in living with HIV. I have also learnt survival tricks that can be used when my health is suddenly threatened by some opportunistic infections. We are living the realities of being HIV positive.
World AIDS Day continues to be a vital platform for hope, learning and collective responsibility. While medical science has made remarkable progress, stigma, fear and silence remain serious challenges. Until society fully confronts discrimination, many people will continue to suffer in silence rather than seek treatment openly and early. Refusing to disclose and living as if one is negative is done at one’s own peril because when illness strikes that’s when all hell will break loose. Disclosure has many benefits as it comes with lots of freedoms as some of us have seen and experienced. Whenever I tell people that I am living with HIV most are surprised and they look at me and say that can’t be true, what with all the good health you’re exuding. Most times I have to go to great lengths to convince them. I also tell them that I almost died from TB in 1999.
Communities living with HIV must be reassured that treatment will remain available and un interrupted especially after disruptions caused by the funding withdrawals by the USA. Governments, partners and health institutions bear a moral obligation to protect access to life-saving medication and to communicate clearly and honestly with all affected communities. HIV is not only about medicine, it is also about dignity, truth, compassion and listening to those who live the story on a daily basis. There is need now than ever before to call a spade a spade and make HIV be just like any other normal health condition where people take their ARVs without fear as is the case currently.
Piason Maringwa
+263774322043
