Living Positively With HIV: My Journey So Far

“Why don’t you use a mosquito repellent or a net?”

“Hold,” putting the call on hold, I slapped the already red arm again, only this time squashing a mosquito in between.

“It’s okay. They are feeding on infected blood; their loss.” That was the first and last time she laughed at that statement, yet I never stopped repeating the same joke again and again. A deliberate attempt to tell her that it didn’t matter. Or did it?

“ELISA and TST”, the receptionist shouted, calling for the lab assistant. But it was the “be careful and wear gloves”, which she whispered, standing at a distance of almost five meters that caught my attention. Was that statement required?, or am I overthinking, or maybe it is just the start of what lies ahead? Ignoring the voices inside and outside my head, I gave the required blood samples, accelerated my motorbike at the highest possible RPM and rode off. Not out of fear or shame, but because I was already running 10 minutes late for office.

30^th Sep 2016, after dropping my parents at a guestroom, I collected my test reports. Sitting in a corner, with my heart beating at the highest possible rate and hands trembling, I took out the reports and obviously, checked the less scary report first. I placed the other report at a legible distance and deliberately started reading from the top-left corner. I read the report again and again and again, meanwhile gathering myself. Finally, I walked up to the receptionist and asked her to take another sample for a ‘Western Blot’ test and paid the dues.

Clueless, I took the safest possible route and drove till my vision was blurred by the tears. I switched on the parking lights, and in a highly melodramatic fashion, positioned myself beside my bike and started crying, on the roadside. After crying for about 18-20 minutes, I strangely started laughing. That was one of the best laughs ever. 40-45 mins on that roadside, and I was back to work, still in shock. I worked like a machine for the next few days, pretending to be all charged up and excited about the upcoming event and my parents being with me, till the confirmatory report confirmed that my life is officially screwed. My brain automatically started working on Plan B, C all the way through to Z.

Two and half years now, and I am still alive, healthy and asymptomatic. I have everything I ever wanted with a little bit of something I definitely never wanted. The last 2.5 years have been a shocking as well as rather a surprising experience. I have found selfless love, made some new plans and worked on contingencies, improved my health, although messing it up afterwards. Life has been normal, with of course a few fights here and there which, to be honest, was no different earlier. Yes, I am a little damaged mentally and physically. I am well paid with a respectable job, yet my savings are frozen in the ice age. I have a beautiful family and a set of amazing friends, but somehow I have managed to push most people away from me. I have zero social media presence and love being that way for all the positive reasons. And as a definite cherry on top, I have no love life. In short, I come in a totally messed up package.

For people who are confused, please keep reading.

I still make mistakes, take calculated risks, win, lose, cry and feel. Everyday is a new day with at least one fight to earn the day, and then there are days that I fail. But whatever happens today, or has happened in my life until now, is in no way related to or because of the Human Immunodeficiency Virus, and most of the depression is self-inflicted. Those 40-45 minutes were the only time I cried and laughed out of pity due to the virus. It is true that life almost took a 180 degree turn and did change a lot after that, but it is also true that had I not been diagnosed with this virus, there would inevitably have been an imbalance somewhere else in life. Life was never, and will never be easy. Stop expecting life to be fair, for it hardly ever is, and start taking responsibility for your choices. I had to inform no less than 15-18 women I was involved with in the last 3-4 years about my condition, and fortunately they all tested negative. But I never got to know how I contracted the virus. Now how fair is that? Honestly, knowing where it came from never really mattered.

Every individual is different, that includes people with HIV. All of us react/would react differently to a harsh and disappointing news such as HIV and have different coping mechanisms. I was fortunate enough to be well aware about the virus, which played a part in coping with this unseen microbe. Not surprisingly, I have come across many highly educated, yet completely unaware people. I happen to have met someone (read: a person diagnosed with HIV) who became weak and gave up everything, including his own life. The internet is full of success stories, which are truly inspirational. But then there are so many of us that do not meet the same fate. Reading about them makes me wish I was there with them, guiding them, because I could. There is more than enough knowledge available on HIV, unless one chooses to be ignorant.

I would like to conclude by putting across a few points from my experience; I believe it would be of help to someone who may not be as aware or privileged as I have been.

1. Irrespective of the HIV status, if you are reading this, congratulations! You have internet access. Read about HIV. Become aware, it’s important.
2. Get yourself tested every 6 months for STDs. The HIV test is cheaper than your monthly mobile recharge and at many government establishments, it is free of cost.
3. Tested positive for ELISA? Wait, there is a confirmatory test too. There are major chances of a false positive result of ELISA.
4. DO NOT be alone. During the whole procedure make sure you have a support system, someone you trust, who cares about you, a source of strength. Talk to him/her. If you are a loner, too bad! Stay calm and be strong. Learn about HIV from all possible sources both before and after the test.
5. DON’T jump into conclusions. You have no choice but to be strong. Find your strength.
6. HIV+? I know how you feel. It is not easy, and will not be easy in the future as well, but learn to take it one day at a time. Winston Churchill said “If you are going through hell, keep going.”
7. Keep your close ones close. They will help.
8. Seek help and counselling from professionals. There is no shame in doing so.
9. I realised the day I was diagnosed that people are more scared for their loved ones, family than they are of the virus. If I had a choice, I would have never let my father and brother know. As much as it is their right to know, so is my right to keep them away from any pain. YOU decide whom to tell, how to tell and when to tell unless you are sexually involved with someone.
10. Be around positive people, try and keep yourself busy. Do not let any negativity near you.
11. IMPORTANT: Inform each possible individual you have ever been sexually active with. It will not be easy, yet it is your MORAL RESPONSIBILITY to tell them.
12. Never miss even a single dose of the prescribed medicine. Antiretroviral Therapy medicine is a life long treatment. DO NOT STOP your medication.
13. Diet plays a vital role. Ask your doctor about a diet plan. Any doctor with basic knowledge can suggest a core diet.
14. Physical exercise is a must. Your body has needs, physical exercise being one.
15. HIV/AIDS has been an unnecessary taboo in the society. HIV is hush-hush. But what really is the society? Do you owe any explanations to anybody?
16. HIV under treatment, is just like any other virus in the body. For example, the virus which causes viral fever.
17. Get yourself medically reviewed by a specialist every 6 months. That keeps a check on your health and if the medicine is working fine.
18. Self-medication is a BIG NO.
19. HAVE SAFE, PROTECTED, CONSENSUAL SEX, OF COURSE AFTER YOU HAVE TOLD YOUR PARTNER ABOUT YOUR HIV STATUS.
20. HIV is a highly complex virus, which has no cure till date. But with medical advancement, it is now treatable with a good life expectancy. You may even outlive most of the healthy people around. A person with HIV is as normal as any other without it. We do not stigmatise people suffering from constipation or diarrhoea, why should we do it for people with HIV? HIV is just a virus in living beings with equal right to breathe; it’s not a banned community.

I wanted to express my point of view, and do not intend to hurt or challenge anyone. I may have missed out a lot or used some language which might be seen as unconventional. If anyone feels bad about the nature of language used, I am sorry, you have a severe problem of selective reading. You can get in touch with me through my e-mail ID sifar.thebeginning@gmail.com. I’d love to answer your questions, and also celebrate the right to remain silent. You may call me by whatever name you feel like.