From MID-DAY
Having HIV, holding hope
Shabana Patel
When my husband tested positive, his family threw him out and he died due to lack of medical support. A month later, I realised I too was HIV positive…
My husband was tested positive in 1998. Unfortunately, back then, there was not much information on HIV or AIDS — even the doctors were scared to treat the infected and the government was not running as many programmes as it does today.
To make matters worse, there was a social stigma attached to the illness. Neither of us realised how crucial confidentiality was and spilled the beans. While my parents were supportive of us, my in-laws and a few relatives boycotted us. They cut all ties with us. My husband, as a result, did not receive the much-needed medical and emotional support and succumbed to his illness in October, 1998.
I was still recuperating from the shock when a month later my family revealed that I too had been tested positive. I had been tested in August but my father who had kept the fact hidden from me for he thought it will be too much for me to take. I sought medical aid but was told that I would not survive beyond a few months. I panicked, but like before, my family extended their full support and stood by me.
After stigma, society showers you with sympathy…I wanted to show the world that apart from a virus, there was no difference between me and a regular person…
In 1999 I approached Asha, a BMC programme that works to prevent STDs. I was told that though I am HIV+, I am not suffering from AIDS and will definitely not die in a few months. I was relieved. But the next stage was that of sympathy. People would look at me with that sympathetic look in their eyes. They would treat me like someone who is suffering from a contagious disease and expected me to be bedridden. This irked me and made me want to prove it to them that apart from a virus that I am harbouring in my body, there is absolutely no difference between them and me.
We started as a group of nine, today our organisation does work in 22 districts of Maharashtra…
It was during one of the counselling sessions that I came across another infected person. Over a period of time we realised that we shared the same goal — helping the affected. By the end of 1999, I was informally working with the affected, helping those who were in need by counselling them and their families to help them cope and accept the reality.
By 2001 we were a group of nine (all HIV+) and we formally launched the Mumbai Network of Positive People (MNP+). We knew we were in a better situation to help people since we had ourselves been through the same hell.
The biggest challenge in our work is dealing with families of the affected. It breaks our hearts to see that people succumb to the misconceptions and ill-treat the affected. A few days back a village couple came for counselling. They also brought their two children along who were not affected. During the session I approached one of the children and took him in my arms. The couple started crying! I got scared and asked them if I did something wrong. They told me that in their village their children are treated as untouchables!
Our organisation has now been around for five years and cover 22 districts all over Maharashtra. Though there is a lot that still needs to be done, we are glad to see that government is taking a serious stand on the issue and working towards it. It's a long and tough journey but I'm glad that there are people who are willing to tag along.
As told to Dipti Nagpaul
How to cope with the stigma
Dr RN Jerajani, psychiatrist and founding member of WHARF, an association that develops programmes to educate the health care fraternity about AIDS, has been working with HIV/AIDS patients for over 25 years now. Here's what he has to say…
There are four stages of reactions once a person comes to know that he/ she is affected. First is that of denial — they don't want to accept the fact that they're affected. Then comes anger, where the person asks himself/herself 'Why me?' The third stage involves questions like 'How long will I live?' and 'Will I be able to sexually relate with my partner?' This is followed by depression. The affected fluctuates between these four stages till s/he accepts the situation. And it is at the acceptance stage where healing begins. But to reach the acceptance level, one needs to understand and remember the following:
* Every AIDS and HIV infected person is not going to die immediately. Today, given the research and medical facilities, an affected can live reasonably longer and lead a normal life.
* These infections are chronic manageable illnesses like diabetes or arthritis, which do not have a cure but where a proper plan can keep the illness under control.
* One does not have to feel guilt or shame since one is capable of leading an otherwise normal life.
* Why think about the illness? Think about health and focus on a proper and disciplined diet and exercise plan as that is what will help you living longer and healthy.
Help’s at hand
Here’s a list of a few AIDS and HIV helpline numbers:
* MNP+ Helpline: 952515634939
* PSI Saadhan Helpline: 23892222
* Mumbai District AIDS Control Society (MDACS): 24100088/24100099
* GLAXO: 24983444
* Salvation Army (HIV testing and counselling centre): 23093566
* Kripa Rotary Helpline: 26429158.
OMG!