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Living positively with HIV

Living positively with HIV

We have received many requests to help increase awareness about drug abuse, HIV and other STD’s. Here is our first attempt to shed some light on HIV, a disease that is mired in misconception and has no cure as of now, through the story of 2 HIV positive individuals.

The Difference: What is HIV vs AIDs?

HIV (Human Immunodeficiency Virus) is a virus, that attacks the immune system of the body. HIV is mostly commonly transmitted by coming in contact with infected blood, semen or vaginal fluids. It can be transmitted by sharing drug needles that have infected blood and can also be passed from a mother to a child.

AIDS (Acquired Immunodeficiency Syndrome) is stage 3 of an HIV infection. When the HIV virus has caused significant harm to the immune system of a person, they become susceptible to various infections. This condition is referred to as AIDS. The symptoms of AIDS will present themselves differently from person to person, depending on the infections that have caught due to their weakened immune system. As their bodies are no longer able to defend themselves, infections among AIDs individuals can prove to be fatal. Tuberculosis and pneumonia are common causes of death among patients with AIDs. Certain types of cancer also become more common when the immune system is not working properly (Jan 2014, HIV vs. AIDS: What’s the Difference, healthline, accessed July 2020)

It is important to understand that HIV and AIDS are two separate diagnosis. All HIV positive individuals do not have AIDs. The HIV virus by itself does not cause the death of a patient. It compromises the patient’s immune system to a point where another infection, disease or illness that a non-HIV person would be able fight can prove to be fatal.

In the 1990’s the life expectancy of an HIV positive person was 39 years. Thanks to extensive research and advancements in medicine, today that number stand at 70 or more.

A conversation on HIV

We got in touch with two HIV positive people and asked them to share their experiences and provide some advice about HIV. Both individuals have not shared their positive status with world and hence we will not be disclosing their names, for the purposes of this article we will refer to them as Robert and Ken. Here are their experiences:

Q.1) What can an individual do to prevent HIV?

Robert: Here are a few things you can do at an individual level that are completely under your control,

  1. Get tested every few months to make sure your sexual health is intact
  2. Always take precautions when indulging in intercourse
  3. Ask your partner about their sexual health

Ken: 

  1. The first thing that needs to be mentioned is abstinence from sex itself or sex with many partners instead focus on sex with one partner after both have tested negative for HIV
  2. Secondly, wearing condoms is still a very effective way of preventing infections. However, it’s important to remember condoms are not fool proof. Sometimes they can be damaged or tear during sex rendering them ineffective. Condoms can also slip off during sex unknowingly, increasing risk.

It is very important to use condoms that are the right size, put them on properly so that they don’t slip off easily. Never lubricate the penis before putting the condom on. Do not use a lot of water-based lubricant after wearing a condom. Have the presence of mind, even in the throws of passion, to keep a check on the condom.

  1. Thirdly, there is a medication available now called PreP, which stands for Pre-Exposure Prophylaxis Treatment. PreP has been conclusively proven to be 100% effective in preventing the spread of new infections. This medication can be taken two days prior to coitus and two days after when sex is more regulated and planned. It should be taken every day if sex is more spontaneous and unplanned. PreP is being made more readily available throughout the world at sexual health clinics and is available for purchase online. The introduction of PreP has seen a record fall in new infections in London by over 75%, consistently for the past four years
  2. Educating the masses. We need sex education in schools, colleges, communities, religious centers, GP Practices, Sexual Health Centers, Counselling Centers and such
  3. Regular testing for infections by sexually active people, at least once every six months can greatly reduce the rate of infection. Regular testing can help the infection be caught sooner and treatment can be initiated which will make the person undetectable and break the chain of further infections.

Q.2) What should one do if they have unprotected sex with someone and are unsure of their partner’s status?

Robert: If you’ve had unprotected sex and are unsure about the status of your partner’s sexual health, the first thing to do is speak to your partner about it. Then both of you should go get tested and then take it from there. This is not the time to get agitated, it’s the time to stay as calm as possible and to clear any doubts that you have in your mind. In case this does come up, you can take pre-exposure and post-exposure tablets which can act as one extra layer of protection.

Ken: If one has had penetrative sexual intercourse either vaginal or anal with a positive partner who is not on medication or their treatment has not yet helped them reach undetectable status or with someone who is unsure about their status due to not being tested, then the person must visit either their GP, or Accident and Emergency at Hospitals or Sexual Health Clinics where officials will assess risk and administer a month long treatment called PEP which stands for Post Exposure Prophylaxis Treatment which must begin within 72 hours of exposure and taken without a break for the whole month. This has proven to be 100% effective in arresting new infections.

Q.3) What should one do once they find out they are HIV positive?

Robert: The first thing to do is to consult with your doctor and start on medication. Get tested for your CD4 count, HIV viral load count. Make sure you are with a doctor that you are comfortable with and speak to someone about it, probably a counsellor or even a friend because apart from physical wellness, the diagnosis can affect your mental and emotional wellness as well. Make sure you have some level of support around you. It is not going to be an easy time but it is also not the end of the world, you will get through it.

Ken: One must immediately start medication; as soon as they find out that they are HIV positive. Being Diagnosed is a life changing event and needs to be treated as such with utmost respect. I would recommend newly diagnosed people to give themselves adequate time to understand and accept what has happened. Now this may be by having therapy sessions or seeking support through HIV Support Services through your clinic or NGO’s. It is important to bear in mind that the news of a diagnosis can affect a person on many levels. There is loss and grief of the life of being negative status lost forever and that loss must be acknowledged and attended to. There can be anxiety about the future and how it might impact relationships, work, insurance, travel, health etc. It is important for newly diagnosed patients to take one step at a time and the foremost of those steps being selfcare. One important element of self-care is support. It will be important to identify and reach out to particular friends and or family who will be supportive and non-judgmental. If there are none, which can often sadly be the case, reach out to organizations that are set up for this very purpose. Isolation is one of the greatest problems faced by HIV positive people. Depression is another, so it is very important to invest in a support system that is dependable and effective. I would encourage newly diagnosed patients to remember that we live on the right side of history in terms of treatment and is constantly improving, allowing HIV positive people to live healthy lives to their full life span. It is no longer the death sentence it was in the 80’s and early nineties. The pressure to disclose status to family, friends, colleagues and partners can be tricky. I would recommend talking this through adequately with your therapist or your support system. One is under no obligation to reveal their status especially if they are undetectable and are taking all necessary precautions. HIV infections can affect the mind and spirit of an individual more than it can affect the body these days. Stigma around HIV is real and powerful.

Q.4) How did your life change after you found out you were positive?

Robert: After I found out there are a lot more things that I am more cognizant about. It’s unfortunate but for me personally, it took getting diagnosed with HIV for me to realize that self-love and self-worth are not just notions that you read about in books and see in movies. They are things that you can achieve as long as you respect yourself and care for yourself. It did affect me mentally. The first few months it was a very hard pill to swallow, excuse the pun. But over time I realized that I had a great support system. I had great friends around me that helped me start my treatment and maintain my metal wellness.

Ken: I feel gratitude every day when It is time to take my daily HIV medication in the morning and at night. It keeps me aware of how lucky I am to have a treatment and that it is effectively helping me live a very normal healthy life. I do bear the weight and burden of keeping a secret since I’ve decided not to disclose my status to my immediate family or my extended family as of now. I may do so in the future but I don’t think I want to just yet. I have disclosed to all my dear friends and to every employer I’ve worked for and I’ve been fortunate that they have all been supportive. But HIV has a way of getting into my head at the most unexpected moments. I can feel completely alone and isolated as no one else in my friends or family circle that I know of are positive. It is also challenging sometimes to find sexual partners who are knowledgeable and supportive. The anxiety around rejection is present, and not just rejection it often is accompanied by shaming and belittling. This can very easily lead to depression.

For many years I was very afraid of HIV and would react quite badly and with hostility towards guys who would disclose their status to me after a sexual encounter. I was very unsympathetic. Now I know better and can see firsthand the complexity of dealing with the diagnosis and with disclosure. Becoming undetectable was a triumphant moment! It changed my life, my view of myself, a burden had been lifted knowing that could never infect another person and I felt fully alive again. I have worked on and healed from my shame around being positive so that has been helpful. I also disclose on dating sites, most of the time the details don’t get read but I tell myself, that isn’t my problem and that I’ve done my part and completely leave ownership of others reactions to them and not take them on in any way.

Q.5) What message would you like share with HIV positive people and to everyone else reading this?

Robert: There’s so much to be said about it and I don’t think we talk about it enough. It is not the end of the world. It can definitely be controlled. I also want to get rid of any misconceptions about being HIV positive. There are a lot of misconceptions in terms of the transferability. You don’t get HIV from hugging someone or sharing a plate with them. You don’t get HIV by shaking their hands.

For other HIV positive even now when people out there, this is not going to be the end of the world. Hopefully, you are on medication and if you take a little more care of yourself, you will be just, just fine. It is going to change the way you live your life. I think it is a great opportunity to love yourself.

For other people out there reading, educate yourself about how HIV is spread, what are the takeaways from all the stereotypes and read about it, please be more aware about how to get tested and how to prevent HIV. I think getting educated is something that you can do on your part.

Ken: Above all else love yourself wholeheartedly. Commit to making yourself thrive, don’t allow yourself to be too caught up with HIV. Once you’ve arrived at the medication that works for you, and you’re undetectable – affirm that status and live with pride, without shame and fear. Allow HIV to be a part of you that helps you be grounded instead of it being a destabilizer. Allow it to teach you and inform you rather than drag you down. Find a way to connect with other positive people and offer mutual support for the entire person and not just their status.

HIV+ people are people first with aspirations, potential, talent, skill, courage, compassion, strength and every other noble human quality. HIV+ people are not delinquent, anti-social, degenerate, diseased, unclean or a threat to public safety. New infections primarily happen because sexually active people don’t get tested if they are symptomless. They believe they are HIV negative. These are the high-risk category who are a danger to themselves and others; not the people who are diagnosed, on medication and undetectable. So please get tested periodically; ideally once every six months. Especially if you are sexually active with more than one partner. If you are on ART my message is keep positive and committed to taking your medication regularly and consistently. If new infections could drop at such an astonishing and encouraging rate as they have in London we can very much hope for zero new infections within our lifetime.

We would love to hear your thoughts, please leave a comment below. If you are looking for support or more information about an HIV diagnosis, you can call the National Helpline run by the National AIDS Control Organisation (NACO) toll-free at 1097.

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