By Diana Awino
In this article we shall define ‘the infected’ as persons whom have been confirmed HIV positive using a laboratory test and ‘the affected ‘as persons whom do not have the HIV virus but whose close ones or loved ones are living with the virus or know someone living with the virus.
Every day in laboratories across Africa someone is confirmed HIV positive. Gone are the days when a positive result meant a death sentence but no amount of counseling can prepare someone for the reality of HIV/AIDS. A positive diagnosis tells one side of the story; it is concerned with the person living with the virus. The pre and post counseling usually done in summary carry the message, ‘ if you are found HIV positive live positively, if you are found HIV negative, do not get the virus,’ but there is a gap, there is no message for the affected! All efforts and interventions are geared towards the infected but what response mechanisms are there for the affected?
What package/ support mechanism is there to comfort a HIV negative mother whose three year old daughter has been diagnosed HIV positive; or the HIV negative Health Worker whose nine year old daughter after a series of constant illness was reluctantly tested for HIV and the results were positive; or the HIV negative partner in a discordant relationship; or the HIV negative parents whose five year old contacted the virus from a heartless neighbor who deliberately tore the flesh of their child with a razorblade infected by her blood in the disguise of tidying the child’s finger nails; or the HIV negative minor who has brought a younger one who unfortunately contacted the virus through mother to child to the Health Centre for antiretroviral therapy; or the minor who has trekked miles to the nearest ART site to pick a drug refill for the dying mother; or the aged woman who has buried her nine children due to this monster and the only surviving child is living with the virus; or the school teacher who has to lecture the topic without stigmatizing a sect of her student; or the employer who has to bear with less hours worked by some of the employees due to poor health; or the orphans left behind because their parents succumbed to the scourge.
Or I seated on my computer at the end of every month punching in scores of new infections into the District Health Information system. Do you see where I am going with this? I pause and pretend to overwrite the pain of the infected and think of the affected. For every new infection embeds numerous people who have nobody to turn to; sobs escape my throat, the pain is unbearable because we have no forums to share our pain, there is no one to tell us things will be okay, or just make us feel less guilty.
Or you reading this article, I may not know your story but I can comfortably conclude that you are entangled in this huge web wound by the dilemma of HIV/AIDS. Your involvement could be inform of millions of foreign aid channeled for the infected or the role played by pharmaceutical companies or the researcher spending sleepless nights in the laboratory or the social worker or a project implementer or a good friend or a writer mention it, in trying to better the situation.
From experience, when a loved one is diagnosed with HIV/AIDS, the close ones to the patient suffer more. Every time someone utters insensitive comments like ‘That is a moving coffin or that patient is wasting drugs for healthy people,’ I break down. Do you know how it feels not to have HIV/AIDS and witness your sister lose the battle to the disease; do you know how it feels to love that person and share their shame or feel their stigma but you cannot describe or quantify the effect because it is not malaria or cough or diarrhea that you one time suffered from. This is the scary HIV/AIDS.
I am not complaining about the beautiful package for the infected but I suggest those involved in provision of HIV/AIDS care should in addition design a coping mechanism for the affected. An HIV positive diagnosis is as heart breaking to the affected. We just pretend to be strong for the infected but the truth is we are weak and dying inside.
HIV/AIDS is bearable when all you have to do is read about it in newspapers or watch on TV. You will have all sorts of ideas and sympathy because you are on the other side. When the tables are turned upside down and you are the one on that side, you run short of ideas. You are caught in your most vulnerable state.
What is your story?
Diana, this is a beautifully written piece. I was so moved by our conversation, and appreciated reading more about it here. Strong work!