10 steps learnt from dealing with an HIV diagnosis that individuals can apply during the COVID 19 global health crisis to remain positive:

In this time of stress, anxiety and uncertainty what did being diagnosed with HIV back in 1997 teach me? What skills do I have that I can apply to help me remain a survivor?

I am in no way trying to compare HIV to our current situation or even suggest that the HIV epidemic is the same as COVID 19.

Last night I could not sleep as my mind took over and I began to contemplate all that was happening in the world as the COVID 19 epidemic takes hold of our every thought. I began to question and delve back in time to what worked and what did not to stay positive and the tools I gained to become a survivor of the HIV epidemic when the narrative back then was all doom and gloom. At the time I was diagnosed HIV positive in January 1997 the only possible outcome was death, according to the medical fraternity and everything I knew back then. Yet, somehow I overcame this reality and today at 61 I am still alive, healthy and blessed. How did I manage this? What are the lessons I learned that I can apply to the situation we are all facing right now?

I have no doubt in my mind that this could be considered worse on so many levels compared to HIV. But here is the first ray of light. With HIV due to stigma and discrimination most people dealt with it in isolation, alone, afraid with nobody to talk to. Today we can stand together, we are all in the situation and it will affect us all in a number of ways, be it health-wise, economically or emotionally this is a burden we all have to endure. Even as I type this I have received two bits of news that would be enough to force me into the depth of despair. My one daughter who works as a social worker at a retirement village is classified as an essential service and has to face the danger of going to work throughout the lockdown placing her and her young family at additional risk. My other daughter works in the hospitality industry and has been informed that all staff will be placed on unpaid leave starting from 1 April to 16 April, even if they have over 21 days leave available they will be unpaid for this period. Economically as a small business the impact on me personally too is a reality. Every one of us can share similar stories as we all face this together.    With HIV I felt isolated, alone believing I could not share this with anyone. It would have been so easy to just give in and give up but I never did! So allow me to share some of my thoughts on what helped me overcome the despair and in my heart of hearts I trust this might help us all to use these tools as we need them more now than ever before.

Have your own narrative – Focus on positive thoughts.

Focus on every possible action that keeps your mind in a positive state of well-being.  When doctors said I would be dead within a few years, all I could focus on was well I am not dead yet. I am alive. I have today. This moment is all I know. What is in front of me now and how can I deal with it positively.

I had to adopt an attitude of I cannot change what is not in my control, but I can focus on what I have control of. I had my mind and at times that was all I had, it was my choice not to focus on the doom and gloom but the opportunities and possibilities.  The question must be BUT HOW? How do you do this when all around you the messages are negative and frightening? Here are 10 steps discovered back then and continue to apply in my life:

Step 1: Focus on factual information and weed out anything that is false or unknown. Question everything, read and research what is fact and discard from your mind anything you don’t have evidence to be true.  Become knowledgeable as the unknown leaves one vulnerable and at risk.

Step 2: Be gentle, loving, patient and kind with yourself.  You are only human and it is easy to be caught up in moments of doubt and anxiety. It’s easy to embrace the negativity and fear based information and false news going around on social media. Admitting you have bought into wrong information and changing your mind is your right. It does not mean you are weak or over-sensitive, you’re just human.

Keep questioning your thinking. Do research and find sources of accurate information.

It was easy for me to listen to all the negative dialogue in South Africa about ARV’s and the then Health Minsters believe that ARV’s were toxic and would kill you. We all know now that was utter rubbish. In this time of COVID 19 the same will happen but be vigilant and seek facts not fiction. Remember you cannot learn everything at once, so be gentle, loving and kind with your thoughts as you give yourself time to adjust to all that is happening.

Step 3: Focus on what you can do and don’t dwell on what is not in your control. Back then ARV’s cost R18 000 a month and were unavailable through the health systems and medical aids and like millions of others had no choice but to do other things that we could do. I could look after my health by focusing on healthy eating, treating opportunistic infections and seeking the services of a support group. What can you do right now to mitigate the impact of COVID 19? Take action to reduce your risk of contracting the virus. Wash your hands, practice social distancing, ensure you have your chronic medication available, eat healthy to keep your immune system healthy, speak to family and loved ones and those with a positive mind-set. 

Step 4: Have a WAWA attitude:  I had a manager that taught me this approach to problems. I have called him by his nickname not his real name, so that for those who know who he is, please don’t disclose as I don’t have his permission to do that. I was going through a bad time at work and it seemed I would be getting notice from a number of my clients as a result of the previous manager’s lack of competence and service delivery and although in no way it was my fault, I took it personally. In a chat to WAWA I kept saying what if, and he would reply “and then what’s the worse that can happen”. I tried to explain the worse I could think of and he simply replied “ok if that happens what is the worst that can happen” no matter what I threw at him he just kept saying and so what’s the worse that can happen. Eventually after exhausting all my possible end-of-world scenarios, I was exhausted and had to laugh. He had exhausted my negativity and I was able to see that no matter what this too will pass and tomorrow remains filled with abundance and possibility. So in the same way I could say to HIV I choose to live and I am alive right now so I can say the same to COVID 19 right now I choose to live and I am alive. And then what – What’s the worse that can happen?  It’s not in my control so let me return to what is in my control.

Step 5: Remain in a state of gratitude: Focus on what you have to be grateful for. Even if it’s seems to be just a small insignificant thing to be grateful for. Right now as I am typing this my two Scotties are lying snoring in my office oblivious to what I am dealing with. I can say thank you for them and for their ability to unknowingly keeping me in a state of gratitude. Think of family, loved ones, having a home or shelter, or the fact that right now you are well. The more you do find the things to be grateful for the more you will discover things to be grateful about and you will attract gratitude into your heart and mind.  So here is a thought, for HIV there remains no cure. I remain grateful that I have treatment for HIV that enables me to live a healthy normal life. With COVID 19 most people do recover. Yes many will die but far more who are infected will get better. The prospects of a vaccine is hence far more possible for COVID 19 as we will have recovered patients with antibodies the scientists and medical researchers will be able to work with to develop a vaccine.  Our government has numerous programmes to mitigate the economic burden. We have a leadership determined to take action. I am grateful for this and even while it might not help me directly I am grateful that it might help many others.

Step 6: Use positive affirmations to dispel negative beliefs and thinking. I watch the panic buying and I think the sh1#4&t seems to be hitting the proverbial fan according to the toilet paper hoarders. I walk into the local supermarket and see someone wearing a mask and am tempted to ask if they are infected or are sick! Back when HIV started people gave into these fear messages in the same way and withdrew their life insurances, gave up their jobs and lost all ambition.  For me that was simply not a choice, I was not prepared to go sit in the sand and say; oh woe is me I am going to die. 

Use affirmations as a tool to re-programme your reality. Affirmations are like seeds planted in the mind, if you keep saying them over and over and begin to use your imagination to feel the emotions of what that reality will feel like, they will germinate and grew. Back in the time of HIV I used affirmation such as the following:

• I am well; my body restores itself to full health.
• All is well in my world

What is your affirmation at this time?

Let me share a story of a friend called Abraham; one morning he awoke to the realisation that he was unable to move his limbs. He was later diagnosed with an immune disease that was attacking his body and organs. His degeneration was so fast he ended up in ICU within just a few days with no body function. Unable to even talk he was kept alive on machines. He could hear what was going on around him but he could not respond at all. It was at an HIV support group that Abraham arrived in a wheelchair to share his story. He was on the road to recovery. What hit me hardest was him telling us that when you have nothing left but you still have your brain you can begin to rebuild your life. He told us how as he heard the doctors saying he would be a vegetable and would never recover. His mind just continued to say, “I will walk again”, “I will heal”, and “I will get better”. Many days when my body was weak and I had nothing left I still had my brain and with that I just kept my belief and re-affirmed through my brain that I will recover. My body restores itself to full health. Sitting in his wheelchair his mind had against all odds achieved in his body what his brain told it to do.   

Step 7: Have a purpose for the future. Now is the time to dream and plan the future. What will tomorrow bring, what do I still want to achieve? Make a mind map of your goals and aspirations. Jot them down and refer back to them if you are filled with doubt. Without a purpose you are like drift wood in the ocean tossed about and thrown this way and that as the waves please. Having a purpose keeps you focused and gives you meaning. I recall thinking I want to walk my daughter down the aisle on her wedding day. I dreamt of having a grandchild on my knee. I dreamt of working for myself and being successful at it. I made sure these dreams were possible, tangible and achievable.  These goals became my anchor and they kept me focused and able to remain positive through the dark days of despair.

Step 8: Surround yourself with positive friends and loved ones and remove those who bring you down and don’t serve your purpose and aspirations.  I found a support network for HIV+ people and they helped me to learn, keep a positive mind set and remain focused.

I stopped watching everything on social network platforms that did not uplift or align to my goals. You can remain informed without buying into every bit of garbage on the internet. Restricting negative messaging, by being selective about the resources and where the information is coming from.  By interrogating everything and stepping back from false news you will be able to not let these message influence your thinking. I know bad news sells so I consciously refrained from believing everything as true and hence making it my reality. I trained my mind to clear out what did not serve me while remaining knowledgeable and informed.  I listened to my inner ding (gut feelings) about what I needed to know and what had no purpose.

Step 9: What you think and say becomes your reality: Being mindful of your self-talk is a key step to reprogramming your mind and your words as they shape your reality and future. Laughter they say is the best medicine, spending time in nature helps, enjoying your garden, reading something motivational. Guard your thinking, your emotions and your feelings as they shape your future. There is researched evidence that what you think and say is sent out into the universe and returns to you and manifests itself in your life. The brain is more powerful than we can ever know. I heard someone say the world will never be the same ever again after this. Well, that might just be the most positive thing if the change is positive and nature and balance are replaced with all that was before this epidemic occurred. What does your future look like? It’s in your hands and more importantly in your mind you can create it if you wish to.  Just because someone else says it so, it does not have to be your reality. The need to buy and hoard toilet paper does not have to be your reality, you can choose to wash your butt rather and you won’t need toilet paper. The use of water in Muslim countries is due in part to Islamic toilet etiquette which encourages washing after all instances of defecation. See no need for toilet paper after all. Define your own reality. Think out of the box and be unique. If you don’t have sanitizer, wash your hands with soap and water.

Step 10: Take action and take control: I have heard a saying that when life gives you lemons make lemonade. Choose to be different. Plan your future. Look after yourself and those that you care for. Remember we are all in this together.

You don’t have to follow others. If everyone says lets jump off a cliff do you choose to just blindly follow?

Take actions to prevent contracting COVID 19 now for your health which include:

• Wash your hands
• When you cough, put the crease of your elbow against your mouth—and if you see someone coughing in a public space, ask them to do it, too. Don't cough over your hands, because your hands end up touching things. That’s general practice—that’s not just for avoiding COVID-19.
• In addition, keeping a cool head is the best option. Don’t panic. Don’t freak out on all the things that are being portrayed in the media right now.
• Manage your other health conditions: Stay on your meds, keep your immune system healthy, keep working out.
• Keep exercising at home to stay fit and healthy
• And, one last time: Wash your hands.

And in the words of my eldest daughter “This too shall pass”. My question to you is will you come out the other side renewed and a better person or not? The choice is yours, what are you going to make of this all, it’s in your hands or more accurately in your mind.

Stay safe, stay strong, with love and light.

Alan Brand

Positively Alive

www.positivelyalive.co.za

Why are women at higher risk of contracting HIV?

Women’s Day Awareness Article

2015

By Alan Brand - Positively Alive - 09 August 2015

In this fact sheet we review specific biological factors in women that make it more or less likely that HIV can be sexually transmitted.

Fast Facts

•          It is estimated that 12.2% of the South African population (6.4 million persons) are HIV positive. This is 1.2 million more People Living with HIV than in 2008 (10.6%, or 5.2 million). The main route of HIV transmission is through heterosexual sex.
•         HIV prevalence in young women 20 - 24 is at 17.4% which is three times higher than in men of the same age, 5.1%. Within the 25 - 29 year age group HIV prevalence amongst women is 28.4% whilst in men of the same age group it is 17.3%.
•         Only 43.5 per cent of male youth (aged 15-24 years) and 40.6 per cent of females of the same age group can correctly identify ways to prevent sexual transmission of HIV and reject major misconceptions about HIV transmission.
•         Women (especially young women and girls) face increased risks of HIV infection, these calls for more effective enabling interventions. Risk-enhancing factors include alcohol abuse, violence against women and socioeconomic insecurity there are many people accessing ARVs which has a huge impact on available domestic resources.

Before we explore why genetically women are more at risk of HIV transmission, lets first look at some important basic information on HIV transmission in general.

How does HIV infection occur?

For infection to occur two things must happen.

·         The virus must find a way to enter your bloodstream.

·         The virus must “take a hold” (find a T/cell with a CD4 and CCR5 receptor which the virus needs to enter the body’s cells) 

Think of it with the word SAD

S = Sufficient quantities of the virus

A = Access into the body

D = Duration

There must be sufficient quantity of the virus to infect you, and it must enter your body in an efficient manner, and their needs to be enough time for this to happen.

There are only three ways in which this can happen:

·         Unprotected sexual acts with an infected person

·         Through infected blood e.g. in sharing needles

·         Prenatally from mother to child during pregnancy or at birth, and through breast milk.

Body fluids!

Body fluids can be divided into those, which contain sufficient quantities of the virus to be infectious. These are:

Blood (100% if HIV Viral load present)

Semen (75% if HIV Viral load present)

Vaginal secretions (50% if HIV Viral load present)

Breast milk (Low but still possible with prolonged breast feeding if HIV Viral load present)

For transmission of HIV to happen, body fluids infected with the virus must pass from the already infected person into the bloodstream of another. HIV can do this through contact with the thin linings of various openings in the body and openings in the skin. These linings contain concentrations of the cells to which HIV attaches to enter the body. The sexual organs of both men and women have such linings.

This is why unprotected sexual acts are the most common route for HIV transmission. The chance of transmission is greatly increased if the lining or skin is inflamed or damaged, for example when another sexually transmitted disease is present.

On the other hand there are other body fluids, which do not contain sufficient quantities of the virus to be infectious.  These are:

Saliva

Sweat

Tears

Urine

How do you get HIV?

• Infection through sexual practices.
• Semen / vaginal fluid coming into contact with the thin linings of various openings in the body and openings in the skin.
• Infection through blood. (Blood products)
• Intravenous drug users.
• Blood transfusions. (Since 1985 all blood is tested for HIV)
• Needles, ear piercing, razor blades, dental tools, (unsterilized)
• Infection from mother to child.
• Across the placenta: - during pregnancy.
• During birth:  damaged lining/skin
• Breast milk:

So why are women at greater risk of HIV?

The risk of transmitting HIV from men to women is much higher than from women to men. This is in part because of the much larger surface area of the vagina and cervix compared to the areas of the penis where transmission can happen (foreskin, urethra and small tears on the head of the penis).

Women are exposed to considerable amounts of seminal fluid during sex, if ejaculation occurs.

The vagina is particularly vulnerable to invasion by bacteria, viruses and other germs. It is an ideal place for bacteria to grow, as it is warm and moist. It also provides an easy entrance into the body.

Women with low levels of the hormone oestrogen may be at increased risk for transmission of HIV because low oestrogen levels directly affect the vaginal wall, making it thinner so HIV can more easily pass through the wall.

How does HIV get into the body through the female genital tract?

The vagina has various defence mechanisms against infection. These help to protect a potential foetus developing in the uterus.

The walls of the vagina are made up of mucous membrane that is thicker than the mucous membrane in other places where HIV transmission often happens, such as the rectum or cervix.  The walls of the vagina have ten to twelve overlapping layers of epithelial cells, which create a strong barrier against germs such as viruses and bacteria.

The vagina is also home to a number of “friendly” bacteria species (for example, Lactobacilli) which are thought to give some protection against less friendly bacteria (for example, Gardnerella vaginalis) as well as viruses that might infect the body.

It used to be thought that HIV can only get through the walls of the vagina through small tears or sores in the mucous membrane. Recent research suggests that HIV can pass between or through healthy cells. This means that HIV can still infect women even if the vaginal mucous membranes are healthy and intact.

Unlike the vagina, the mucous membranes lining the cervix and uterine walls have only a very thin layer of cells (often just one layer thick) and so it is much easier for viruses like HIV to cross into the body through the cervix and possibly the uterus.

Because the cervix acts as a barrier to protect a potential foetus, it is home to a large number of immune cells. Many of those immune cells are CD4+ cells, which are the cells that HIV is most able to infect.

What about sexually transmitted infections?

Women are at more risk for sexually transmitted infections (STIs) than men. In addition, women often have fewer obvious symptoms, and therefore don’t get treatment until the infection has been present for a long time. 

Having an STI increases the risk of HIV transmission in several ways:

•         All STIs cause inflammation of the mucous membrane. Inflammation is the body’s immune response to an infection or irritation. When the mucous membrane is inflamed, a large number of immune cells come to the area to fight the infection.
•         Many of those immune cells will be CD4+ cells or other immune cells that are involved in HIV transmission. In addition, when cells are fighting off an infection, they become activated. Activated CD4+ cells are more easily infected by HIV.
•         Some STIs also cause open lesions or sores, which offer an easy way for the virus to get into the body and cause an infection.

Why are women at higher risk of being affected by HIV?

·         Some women may be unaware of their male partner’s risk factors for HIV (such as injection drug use or having sex with other men) and may not use condoms.

     

      The risk of getting HIV during vaginal sex without a condom or other protection such as PrEP is much higher for women than it is for men, and anal sex without a condom or PrEP is riskier for women than vaginal sex without a condom or PrEP.

·         

      Women may be afraid that their partner will leave them or even physically abuse them if they try to talk about condom use.

·         

      Some sexually transmitted diseases (STDs), such as gonorrhoea and syphilis, greatly increase the likelihood of getting or spreading HIV.

·         

      Women who have been sexually abused may be more likely than women with no abuse history to engage in sexual behaviours like exchanging sex for drugs, having multiple partners, or having sex with a partner who is physically abusive when asked to use a condom.

·         

      Some HIV infections among women are due to injection drug and other substance use—either directly (sharing drug injection equipment contaminated with HIV) or indirectly (engaging in high-risk behaviours while under the influence of drugs or alcohol).

What is “SAFER SEX”?

“Safer Sex” Means: - Sexual practices, which involve the use of condoms for penetrative anal or vaginal sex, and the use of many different forms of experiencing sexual pleasure without placing people at risk of HIV transmission.

Always talk to your regular or potential sexual partner about safe sex.

Alan Brand

Employee Wellness Consultant and Specialist HIV and Employee Wellness Training Provider

www.positivelyalive.co.za

A question about PrEP

What is PrEP? PrEP stands for Pre-Exposure Prophylaxis. The word “prophylaxis” means to prevent or control the spread of an infection or disease. The goal of PrEP is to prevent HIV infection from taking hold if you are exposed to the virus. This is done by taking one pill every day. 

These are some of the same medicines used to keep the virus under control in people who are already living with HIV (called Anti-retrovirals). PrEP is meant to be used consistently, as a pill taken every day, and to be used with other prevention options such as condoms.

In several studies of PrEP, the risk of getting HIV infection was much lower—up to 92% lower—for those who took the medicines consistently than for those who didn’t take the medicines.

Dear Alan. Right now, I’m still battling to get my head around the whole I am positive idea... I started seeing a guy a few weeks back, had amazing time together and connected amazingly...

Unfortunately, it seems there are still many people who are not educated about HIV, therefore when we eventually had the discussion around HIV... He ran miles... He does not know about it at all, nor what it means to be undetectable etc...

We have stayed in touch as friends subsequently and I have slowly but surely tried to educate him and talk to him about it and shared a few links with him through your support network however, he is still very scared and sticks to the "stigma" of the past...

I tried to explain to him around using PrEP as well, explaining the significantly reduced risks. But he is now so scared because and his words "I would never have thought you were HIV Positive"... And says he doesn’t want to be with anyone because he doesn’t know anymore. Hopefully in time I can educate him and in general people around the world will become a little bit more educated about HIV and the risks and how to mitigate these risks.  

The questions he asked me, for someone who is 31, were quite scary and clearly showing how little information and knowledge about HIV he has.

But, hopefully when I meet someone special one day and if they are Negative I will be able to have the skills to be better able to discuss the same issues any guidance would be greatly appreciated.

Dear M, thanks for your comments and indeed it is so sad that for over 34 years HIV continues to been an issue of humanity and although we have had to deal this yet still so much ignorance, shame, stigma and denial continues to exist. But before I was diagnosed HIV+ back in 1997 (18 years ago) I too was caught up in ignorance, intolerance and denial. Hence I will continue to remind myself of my own ignorance and denial not to mention my feelings of stigma and lack of knowledge towards those infected back then. This always helps me to remember that people only are interested in education about something when they feel the issue is of benefit to them or will affect them in some way. 

Sadly many simply remain like ostriches with their heads so deep in the sand and notion; "It is not my problem" that one can but only be compassionate and sympathetic at their attitude. It is a protection mechanism of sorts, “what I don't know about I don't have to deal with” mentality. Silly as it might sound perhaps but that the biggest barrier to HIV awareness.

I commend you on taking the stand to make a difference and if only all HIV+ individuals could do that we would be much further down the road to making a real change and getting people to realise that it can happen to anyone and nobody is immune to the HIV virus. If anything the very stance of "It cannot happen to me" is what places most people at highest risk.

Fear is a very real experience and unfortunately for far too long fear has been the only way HIV awareness has been used to no effect. It is simply human nature when presented with fear and no other alternatives but fear to shut down and fall into the trap of ignorance and denial. In 2015 we now have such a better position with so much more at our disposal. We can speak about real ways to prevent transmission such as PreP, and all other treatment as prevention methods (TaSP), condoms, water based lube, undetectable viral loads etc etc etc.

I’m assuming that somebody is going to take the lead in getting the PrEP conversation started. Here are some steps to kicking it off and keeping it moving forward: 

Start with a reminder: I love you. When you’re having a conversation about your relationship, start with reconfirming your foundation. After all, you’re together because you love each other. 

State your intention: This isn’t the time to be a wimp about why you’re starting this conversation. But that also doesn’t mean you’re here to lay down the law. So how about making it clear that this is a decision for you and your partner to make together? You might say something like: “I’ve been thinking about PrEP and what it might mean for us. I want to talk to you about your thoughts. Is that OK?” If your partner isn’t ready to have the discussion, you may need to drop it for now and bring it up again when he/she is ready.

Let your partner talk first: You might already be aware of your partner’s feelings about PrEP, or maybe not. Either way, give your partner a chance to express their opinion first. This approach can help your partner to feel like this really is a conversation and not only an opportunity for you to express your opinion or state the decision you have already made on your own. “I’m really interested to know what you think about PrEP.” 

Listen: Early and often. Conversations are an interchange between two people. You take turns talking and listening. So when your partner talks, really listen to what they’re saying — instead of thinking about what you want to say next and waiting for them to take a breath so you can jump in. If you aren’t feeling listened to, gently ask your partner to do the same. It might help to state what you just heard your partner say, in your own words, to make sure you understand: “So you are saying ______.” Listening is one of the best ways to honour another person.       

Offer to team up on getting informed: Make this an opportunity to look for information together. Share what you learn. Make a list of questions to get more information on. You might also want to meet as a couple with your doctor to talk about PrEP. To kick off the information-gathering: “How about if we get on the Internet and do some research? Where do you want to start?” 

Get to the why question: OK, here goes what might be the hard part. At some point in the discussion, you’re going to need to clearly state why you want to consider going on PrEP, why you want your partner to, or why you won’t. Since you kicked off the conversation, your partner will at some point ask you the “why” question. Again, this is no time for talking around the issue. “Here’s why I think PrEP would be a good idea for me/you/us.” Or, “here’s why I don’t think it’s a good idea.” And then state why. 

Keep listening: The conversation may go smoothly. Your partner may also have been thinking about PrEP and welcome the opportunity to talk about it. On the other hand, some elephants may have been wandering around your living room (one of them named “Trust”) that needs to be identified and discussed. This could get uncomfortable. If so, listen with an open mind. Try to understand your partner’s concerns without being defensive: “I really want to know how you are feeling about this.” Again, it might help to restate what you think you just heard: “So what I think you are saying is _________.” Keep your head in the game even when you’d rather tune out.    

Get clear on life with PrEP: PrEP may not make much of a difference at all beyond providing an additional barrier against HIV exposure. But it may also mean renegotiating some boundaries, or at least being up-front about boundaries that you have kind of been avoiding talking about. As the saying goes, put your cards on the table. Get specific with each other about what your relationship would be like with PrEP. 

Consider this conversation a work in progress: You may need to consider the PrEP decision from a variety of angles before you come to a decision that you can both be comfortable with. Remember: Patience is a virtue. Give your partner time and space to work through his/her concerns on their own as well as with you. Keep the conversation going. 

This may be one of the most important conversations you and your partner have had so far. Approach the PrEP conversation with honesty and with an open mind. Hear each other out. Share information. Try to understand each other’s concerns and expectations. Be patient and kind. Keep talking.

On a personal level let’s consider the HIV partners role in all of this discussion

Do not lose hope as what I have found is the more I became willing to be open about my status, coming to a slow acceptance of the reality myself, I found myself surrounded by love and acceptance from others. Daily I dedicated my life to making a difference in the attitudes and experiences of others towards the realities of HIV and AIDS. On this path for the one or two people that I discovered that rejected me or turned away in fear many more came towards me with love, embracing the ability to gain knowledge and hence have become part of the solution rather than through ignorance continuing to contribute to the problem.

Learning to again love myself and accept the virus through the tools I gained I found others embracing these tools too for issues in their own lives. For me the major lesson I had to learn and continue to learn afresh every day was that "Forgiveness is the path to self-love, and self-love is the key to inner healing". Forgiving myself for getting infected, forgiving the person that passed the virus on to me (I was not raped I went and through my own decisions and actions I got infected, so I take responsibility fully for that decision but that acceptance has given me the ability to forgive myself), forgiving the virus for entering my life as I never invited it into my body in the first place. 

All of this has released within me the ability to look myself in the mirror and I am able to say to myself, "Alan I forgive you and I love you, you are not a bad person". So I have learnt to love myself again. Through that love and my own acceptance of myself I was able to reach out and ask for help and guidance and have learnt from so many wonderful teachers along the path. As my light of acceptance and love shone bright I believe that it too has attracted others in pain and denial to me. What a blessing! And I do not give HIV the credit for any of this it was the teachers and myself that decided to rise up and be different. I did not sit on a pile of sand and say, “oh poor me, I am going to die”. I chose life and every day I am grateful just for today, for today I have the choice to make this day the best it can ever be.

I wish you too the ability to continue to shine as you already do and I know through your path you too will find the love and acceptance from a person like I have. I met my life partner in November of 1997 and disclosed my status to him, yes he needed his own time to learn and come to acceptance of the situation. Together we have walked different paths at times but always hand in hand. What a blessing that has been. My daughters and family too have had to deal with my status in their own time and in their own way and I am blessed again with love and acceptance.

Start with your own journey of acceptance and learn again to embrace yourself as a unique, special and wonderful person and without a doubt people will be drawn to you and the love you have to share and give. 

Nobody ever said this path is easy but my word, has it been a wonderful experience, I wish the same for you

Alan Brand

Employee Wellness Consultant and Specialist HIV and Employee Wellness Training Provider

www.positivelyalive.co.za

Stigma and Discrimination - Obstacles to an Effective HIV and AIDS Response - World AIDS Day Message 2013

By Alan Brand 

Introduction

“Getting to Zero", I am of the opinion that Stigma is the final battle front in the war on HIV and AIDS. We have made unbelievable strides in care and treatment. Treatment as prevention (TASP) is in our hands, used correctly we can achieve the objective of "Zero New Infections" and soon "Zero AIDS Related Deaths" will become a reality, it is not impossible to have a vision of an AIDS free future! However, all these efforts will fail if we do not overcome stigma and discrimination. Getting to an 'AIDS Free Future' will require strong political will, effort and commitment from all if we wish to succeed and reach the target of "Getting to Zero Stigma and Discrimination". This final frontier must be overcome now! We cannot afford not to! Without wiping out stigma ....HIV and AIDS will continue to spread and the AIDS related deaths will continue unabated!  

             

Let us first reflect back on the past.

Acquired Immune Deficiency Syndrome (AIDS). I first heard those words more than 25 years ago. But it wasn't until eight years later; when I heard the following words from my doctor “your HIV test has come back positive”, that the reality of what it meant really hit me. By that time more than 4million South African’s had contracted HIV, and many thousands had died of AIDS. The disease had become real for me and for my colleagues in virtually every corner of the country.

So much about HIV/AIDS and the epidemic has changed since then. Yet one thing has not changed nearly enough -- HIV is now, as it was in 1980’s, the most stigmatised disease in South African society.

In the 1980’s, the stigma attached to HIV, while undeserved, was at least a little more understandable. We knew very little about the disease then. Fears of being infected from kissing, holding hands or sharing a cup with someone with HIV was still common.

Doctors and patients were scrambling to stir up scientific research programs that in many ways had been slow to respond. Despite a rapidly expanding caseload, there was very little reliable medical or scientific information about the virus, how it was transmitted, or what could be done to treat it.

In fact, effective HIV treatments were virtually non-existent at that time. The few medicines that were being used were no match for the virus,  treatments quickly became ineffective as resistance to these drugs occured. The treatment regimens often involved so many pills and such severe side effects that many people felt that taking their medicines every day was as difficult as the disease itself.

Too often, being HIV positive meant having to cope on your own. It wasn't uncommon for doctors and other healthcare workers to refuse to see patients who they knew were HIV positive. Social workers, lay counsellors and activists around the country responded at that time, and services for many people began, gradually, to improve.

The situation today is very different. We now know how HIV is transmitted, and we know how to prevent infection. Scientists have learned how HIV attacks the body's immune system, what its weaknesses are and how to exploit them. They've even mapped out the virus's genetic structure.

HIV treatments have also improved dramatically in recent years. With the introduction of powerful new drugs in the mid-1990s, HIV/AIDS death rates began to drop for the first time since the start of the epidemic. More recently, treatments that require fewer pills and cause fewer side effects have begun to help people with HIV/AIDS live longer, healthier and fulfilled lives. Thanks to these advances in care, HIV is well established as a chronic but medically manageable condition.

Support services for people with HIV have also improved. In practically every city across the country you will find community organisations and groups dedicated to helping ensure that HIV positive individuals get the care and support they need and deserve.

Yet, despite all this progress, the terrible stigma associated with HIV and AIDS continues unabated. Isolation, fear and shame continue to cloud this diagnosis of an HIV status for many.

What's worse is that the stigma surrounding HIV actually helps to perpetuate the epidemic. Most of the over six million South African’s estimated to be infected with HIV don't even know they have the virus. The cause of this reality is not ignorance as much as it is fear of rejection and discrimination. Each year, thousands of people who have contracted HIV do not get tested out of fear that an HIV positive diagnosis will mean a life of isolation and discrimination.

Misinformation accelerates the spread of HIV in communities across the Southern Africa, particularly among minority and poorer populations that already suffer more than their share of prejudice and discrimination. Despite progress in so many other areas, HIV infection rates continue to grow.

We can't afford to let another 20 years go by before we separate the myths surrounding HIV and AIDS from the reality. It's time we started seeing the disease for what it is: a serious communicable disease that is both avoidable and although still incurable has become very treatable and manageable. We need more open and frank education and more community leadership to address this epidemic. We must also target resources to address the changing demographics of the disease, so that information and education programs can be tailored to the audiences that need them most.

Finally, people living with HIV/AIDS must have access to the medical care, prevention and treatment information they need. Research advances have meant that more and more people with HIV are living full, normal lives. It's time that the human progress in how we handle HIV/AIDS in our community begins to match the advances being made in the research lab.

Give the following questions some thought:

Question 1:

Has the message about HIV/AIDS over the past 30 years helped or increased stigma and discrimination around HIV/AIDS? Consider the following:

• Today, people with HIV are still stigmatised and continue to face many forms of discrimination.
• Some people are refused employment or membership of employee benefit schemes.
• Some people are refused proper health care and equal membership of medical schemes, or their children are victimised at schools. 
• Many people are tested for HIV in our hospitals without giving informed consent, or are told about their HIV status without receiving proper counselling.
• Breaches (breaking of) of confidentiality and privacy happen almost every day.

Questions 2:

Why does stigma and discrimination help spread HIV? Consider the following: 

• Is it who and what you are that puts you at high risk of contracting HIV, or 
• Is it behaviour that puts you at greater risk          

Questions 3:

How do we stop discrimination? Consider the following:

• Can the law help?
• Does having a constitution help?
• Does having knowledge help?

Today, we know that stigma and discrimination has helped the spread of HIV. Discrimination has made it easy for people to blame others without protecting themselves. Instead of campaigns that educate everyone in our society, people have been taught to believe that HIV infection only happens to gay people, prostitutes and ‘people who sleep around’. If you are not gay, a prostitute, or promiscuous you are ‘safe’. This is not true.

Key points:

• Types of behaviour, not groups of people, put you at risk of HIV infection. 
• For as long as people with HIV continue to face discrimination, people will be afraid to volunteer for an HIV test,
• This means that it will be more likely that they will unknowingly pass HIV on to other people.
• Unless people are encourages to come forward freely to tell others about their HIV status, ignorance and misunderstanding about HIV and who is affected by it will continue.

Discrimination is prejudice in action!

The non-legal definition of prejudice is “Preconceived judgments or decision; unreasonable predilection or objection; esp. an opinion or leaning adverse to anything without just grounds or before sufficient knowledge.”

Now that is a bit complicated so I am going to simplify it down to “illogical reaction to fears of anything outside ourselves”.   And, yes, people often have prejudices even when they have been presented with the facts that point to the fears being groundless.

The list of prejudices dreamed up by the public and especially public figures, educators, clerics, generals, and politicians is almost endless. Just about any complaint that has been thought of has soon had its associated prejudice.

In the First and Second World War hatred of Germans was considered national pride, even though a great percentage of the people who founded the United States were German.  In fact, In the USA, English as the national language won over German by just a few votes!

In the Second World War hatred of Japanese was even more irrational.  Driven by movies and the press, that hatred came to a fever pitch during the WW11.  Those of Japanese descent and Japanese on American soil were rounded up, thrown into concentration camps, and deprived of their land and possessions.  Amazingly enough, this did not happen to those of German descent!  Talk about irrational.

Now people in the United States can’t get enough of Japanese cars, computers, electronics, etc.  And they admire the German people for their cars, military, clean living, etc.  Talk about irrational.  But there it is: once the threat is past, all the bad things we perceived about the “enemy” are forgotten.

Prejudice and fear?

The best example of how prejudices, fuelled by fear creates myths and illogical reactions is the story of “Juliana’s cloth disease” of Tanzania.

The story goes as follows:

A handsome Ugandan trader arrived selling cloth for women’s kangas with a sort after patterned named Juliana. A village girl with no money traded sex for a kanga, as did several other women who converted the beautiful Juliana patterned cloth into a wrap or kanga. Some months later the first girl became sick: she had no appetite, could hold down no food, and had constant diarrhoea, which filled her with shame. In a few weeks she wasted away, grey and weak, and had to be carried everywhere. Before she died, two other women, also adorned in Juliana’s cloth, came down with the same strange disease. The people of Lukunya decided that the Ugandan was a witch, and that the Juliana cloth had evil powers. To conquer Juliana’s disease, traditional healers toiled to lift the stranger’s curse. But the curse was too powerful and the death toll continued to rise. Within a year the curse had spread to the neighbouring villages. Rumours of widespread witchcraft spread through the Kagera region, and traditional healers felt compelled to solve the Juliana mystery. (Garrett, 1995:334-335)

In 1995 doctors identified that the reported cases of wasting disease (“Juliana’s disease”) in Kagera, Tanzania as AIDS cases, based on comparisons with published symptoms in the medical journals in the U.S.

However the story does illustrate how people can experience the world in a unique and very specific way that is different from the way in which others experience it. Understanding these beliefs and not simply laughing them off as silly prejudices that result from ignorance is critical to our ability to address HIV and AIDS prevention messages in Africa.

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Below is an exert taken from Alan’s recently published book called, “Positively Alive” published by Jacana, 2005 which is available at Exclusive Books.

Positively Alive

I remember the first World AIDS Day celebration that I attended in 1998. A number of HIV/AIDS organisation rallied together to commemorate the event at Zoo Lake in Johannesburg. It was only a small gathering of people but the event made a huge impact on me at the time. Beautiful, haunting music was being played from a car radio. The event was more a memorial ceremony than a celebration. As the sun set, a prayer was said and everyone was given the opportunity to light floating candles. These were then placed on the lake in memory of loved ones that had died of AIDS. As I watched, I was struck by an overwhelming sense of the hopelessness and loss that each candle represented. To make matters worse a gentle breeze was blowing and as each candle was placed on the water it would simply flicker and die. Hands reach out to try and keep them protected from the breeze. A few managed to be re-lit only to quickly fade and sink beneath the water. The entire event reflected the hopelessness and lack of ability to do anything for those infected at that point in time.

In this time of despair, I was forced to consider the purpose of my life. As I began to examine my belief structures I entered into a holistic approach to health through the crisis of this terminal illness. I have learnt so much and become a far more spiritually mature person.

So much has changed since 1998. HIV is now classified as a chronic manageable disease with continuing improvements in the availability of medical treatment. Much more is known about the effects of balanced nutrition in relation to maintaining a healthy immune system. The effect that stress has on the individuals’ ability to heal is well documented.

The HI virus, however, continues to affect millions of people throughout the world. The traumas experienced by so many people infected by HIV and AIDS indicates that health is generated by a balance of the emotional, psychological and spiritual aspects that form the core of who we are.  In the same way that my being HIV-positive has brought a crisis into my family so the planetary family is facing the same crisis of HIV. We will never be able to overcome this epidemic by individual responses. By begin to think of ourselves as united in our efforts – firstly healing ourselves – and then our relationship to each other; we can embrace the reality of healing our planet. If it is true that, “AIDS is, indeed a virus that thrives on “victim” consciousness, fear responses and isolation” - Caroline M. Myss then surely love with compassion and acceptance will go along way in helping those affected by HIV and AIDS to remain ‘Positively Alive’.

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Contact Alan Brand from Positively Alive should you wish to inquire about a quotation to host the accredited workplace related employee wellness and training modules at your workplace, these courses are facilitated by Alan Brand from Positively Alive, and   include amongst others the highly successful: “Mitigation of HIV and AIDS related stigma & discrimination in the workplace – Training Module”.

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Alan Brand

POSITIVELY ALIVE ^cc

Employee Wellness Consultant and Specialist Trainer

Website: www.positivelyalive.co.za