First reactions – (On being Diagnosed HIV+) – Living positively with HIV.

By Alan Brand, 01 December 2015 (Article for World AIDS Day 2015)

People react in many different ways when they hear that they have HIV. You might carry on as if nothing has happened, you may search out lots of information, or you might find it difficult to accept the news.

You may blame yourself. But HIV does not infect people because they ‘deserve it’ – having HIV does not mean you are a wicked, immoral or stupid person.

Most people get HIV from a sexual partner. You might not have known about HIV at the time, or not thought you were at risk, or you might have decided not to worry about it for once. All these are very normal, human things to do.

You may blame someone else. If you think you know who passed HIV on to you, you may understandably feel angry with them.

But they may not realise that they have HIV. Very often, HIV is passed on by people who have only had it for a few months themselves, usually without knowing.

Or they may have known and not told you. Perhaps things would be better if they had done. But many people are afraid of telling others, because they feel ashamed, or are worried about being rejected. It’s not easy to tell. We’ll look at how to tell other people later. 

Keeping an eye on your health

You can’t tell from someone’s physical appearance, if they have HIV or not. And you can’t always know how good their health is. But blood tests can show how HIV is affecting your health. Whether or not you are taking treatment, it’s important to have some tests done regularly.

One important test is called a CD4 count and is a measure of the strength of your immune system. A low CD4 count means that HIV is damaging your immune system. A higher CD4 count shows that your immune system is stronger. Another test is called a viral load. It’s a measure of the amount of HIV in a sample of blood. If you are taking treatment, the viral load test shows how well your treatment is working – the lower it is the better.

Have these tests done every 4 to 5 months. They will help you and your doctor make decisions about your health and treatment.

Quick guide to test results:

CD4 counts (An important monitor to determine when to embark on treatment as it measures the strength of your immune health)

·         Between 500 and 1200 = usual for people who do not have HIV

·         Above 350 = HIV treatment is not usually recommended

·         Below 350 = HIV treatment is recommended

·         Below 200 = There is a higher risk of illness and infections, so HIV treatment is recommended

Your doctor may give your CD4 results as a percentage

·         Above 29% = similar to CD4 count of above 500

·         Below 14% = similar to a CD4 count of below 200

Viral Load (An important monitor to determine how well your ARV treatment is working as it measures the amount of HIV in a sample of blood)

·         Between 100,000 and 1 million = High

·         Between 10,000 = for people with HIV not on treatment, this is low

·         Below 50 = known as an “undetectable” viral load. The aim of HIV treatment is to have an undetectable viral load also known as viral suppression.

IMPORTANT POINTS:

·         CD4 and Viral load tests give essential information about the effects HIV is having on your immune health and hence your bodies response to infections and illness.

·         The aim of HIV treatment is to have a very low (or undetectable) viral load and a high CD4

·         When the CD4 count is low, the viral load is usually high. This situation is not good.

·         When the CD4 count is high, the viral load is usually low. This is much better.

·         If your CD4 count has dropped to 350 or below, it is recommended that you start ARV treatment.

·         The result of treatment should be that the CD4 is going up, and the viral load is going right down to undetectable levels.

HIV treatment

HIV treatment involves taking tablets (ARV’s) once or twice a day. ARV treatment stops the virus from reproducing and reduces the amount of HIV inside your body. If there is less HIV, there is less damage to your immune system, and you are less likely to get ill.

And if there is less HIV in your body fluids, you are less likely to pass on HIV (for example to a sexual partner, or to your unborn child during pregnancy).

The aim of HIV treatment is to have an ‘undetectable’ viral load – this means there is only a tiny amount of HIV in the body. ARV treatment is not a cure – they cannot totally wipe out HIV from your body.

HIV treatment helps you stay well by reducing the amount of HIV in the body. All ant-HIV drugs (ARV) try to prevent HIV infecting new cells. But different types of drugs do this in different ways. A combination of two to three different types of drugs provides a powerful attack on HIV. The aim of treatment is an “undetectable viral load” – very low levels of HIV in the blood.

Should I take HIV treatment?

Not everybody with HIV chooses to take anti-HIV drugs straightaway. Treatment will usually be recommended:

·         if your CD4 count is below 350,

·         if HIV is making you ill,

·         if you have another health condition such as hepatitis or TB,

·         if you are pregnant, or

·         if you want to take it in order to reduce the risk of passing HIV on to a sexual partner.

N.B: By knowing your status early you will give yourself enough time to find out about your options and make the right decisions in time.

Taking drugs on time

HIV treatment only works well if it is taken exactly as prescribed.

This is often called ‘adherence’, and it means taking the drugs:

·         at the right times,

·         at the right dose, and

·         following any advice about food and drink.

The nurses, pharmacists and doctors at your clinic can help you with this. You may need to develop a routine that helps you remember to take the drugs at the same time each day.

If you sometimes forget to take your pills, the drugs you are taking may stop working properly. If this happens you would need to change your treatment.

KEY POINTS ON ADHERANCE:

·         It is essential to take all your doses of HIV treatment at the right times and in the right amounts.

·         Taking anti-HIV (ARV’s) drugs regularly will mean that there is always enough of the drug in your body. This will keep HIV under control.

·         Not taking ARV’s as prescribed can result in HIV becoming resistant to the drug treatment choice you are on and can result in HIV being harder to treat in the future.

Looking after your health

As for anyone else, taking care of your health involves more than popping pills.

It will also help if you can:

·         Getting sufficient rest and sleep is important so that you can wind down and strengthen your immune system.

·         Eating a balanced diet to maintain a healthy weight gives you energy and ensures that you get the nutrients your body needs.

·         Get some exercise, which is good for the heart, lungs, circulation and mobility.

·         Give up smoking, if you are a smoker.

·         Talk to people and seek support (isolation and stress are bad for your health too).

As well as improving your physical health, all these things are good for your feelings and emotional wellbeing. For example, exercise can make you feel more relaxed and energised.

During difficult times, you may find that you use more alcohol or drugs. They may help you to forget, or to stop thinking about things. While they may offer temporary relief, relying on them is likely to make your feelings harder to deal with in the long run. Too much drink or drug use usually brings its own problems.

Seven ways to look after your health:

1.     Eat a balanced healthy diet

2.     Get some exercise

3.     If you are a smoker consider giving up smoking

4.     Get enough rest and sleep

5.     Talk to people and get a support for example: join a support group.

6.     Attending your clinic appointments and have regular blood tests.

7.     Take anti-HIV (ARV) drugs, if your blood tests show that you need to. 

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

Rights to Confidentiality and Privacy – The Law

Dear Alan,

Please accept my apology for missing the group, I really wanted to attend but sometimes the best planned events still get hijacked.

I need some advice that you might be able to help me with.

I’m separated at the moment from my spouse and divorce proceedings are about to start (I’m all fine with that) but my lovely husband has been making gentle and other very clear statements that he will disclose my + status to all my clients and ruin my life if I do anything to upset him. He is a registered 

Dr with the AHPCSA but when I contacted them to ask about Dr/patient confidentiality I was told that it doesn’t extend to spouses and that the law becomes very grey in this matter.

Today he stated that if he finds out I’m having sex he will inform the person that I’m HIV+ and trying to kill them knowingly.

I’m not stupid and know that most of his claims are tactics to keep control over me but we both know that should he go ahead, even if I can prove the contrary, the damage would have been done.

He told his sister about my status as she sent me a SMS today to say she will make it public knowledge should I go against her brother in any way, so the ship has sailed as far as him disclosing my status goes.

I can lose my business and everything if he discloses my status in this way.

Is there any legal protection to stop him...no point in legal action afterwards, I need something that will stop him from disclosing to anyone else.

Sorry for the long message but I think you get the idea of what I mean and need.

If you know of anything or could direct me to a link or anything I will be forever grateful to you.

Kind regards,

P

Dear P, I look forward to seeing you at one of the support meetings again soon.  It is totally against the law and our constitution to disclose the HIV status of another person without their consent.  The Allied Health Professions Council of South Africa (AHPCSA) is incorrect it is not a grey matter as the rights of people with HIV are clearly defined by the South African constitution, as well as their own guidelines. It is very clear based on the law that even a threat to disclose another person’s status is illegal for the purposes that your ex-partner is threatening to do so. 

I recommend you contact the AIDS Legal Network on 0214478435 or visit their website for more details on www.aln.org.za also the AIDS Law project now called + Section 27 would be able to assist you. Visit www.section27.org.za contact details are 011 356-4100.

Also you can contact the Section27 advice centre on 011 356-4117

By doing this now they could assist you to notify your ex that if he continues to threaten you or breaches your right to privacy he will and can face litigation.

To better understand your rights let’s look at what the Laws in South Africa have to say about HIV and confidentiality/privacy;

The South African Constitution

The Constitution of South Africa protects the rights of people living with HIV. It doesn't allow discrimination and protects people’s right to privacy and confidentiality. In South Africa, there aren't any laws that force people to tell others about their HIV status. People who do test positive should tell their partner, so that they can be protected and also have an HIV test. People with HIV/AIDS in South Africa are protected by the Bill of Rights and have the same rights which protect all citizens.

• There can be no discrimination against anyone who has HIV/AIDS.
• Test results cannot be shown to anyone else without the permission of the person who had the test.

The Basic Rights of people living with HIV/AIDS

• People living with HIV infection and AIDS should have the same basic rights and responsibilities as those which apply to all citizens of the country.
• People with HIV infection or AIDS are entitled to make their own decisions about matters that affect their marriage and having children. Counselling about the consequences of their decisions should be provided.
• People with HIV and AIDS have the right to confidentiality and privacy about their health and HIV status.
• Information about a person’s HIV status may not be disclosed to anybody without that person’s fully informed consent.
• After death, the HIV status of the deceased person may not be disclosed to anybody without the consent of his or her family or partner – except when required by law.
• Medical schemes may not discriminate against any person on the basis of his or her state of health.
• People have a moral and legal obligation to tell their sex partners if they are HIV positive.
• Insurance companies may not unfairly refuse to provide an insurance policy to any person solely on the basis of HIV/AIDS status.
•  All people have the right to proper education and full information about HIV and AIDS and how to prevent it.

The Basic Rights of people living with HIV/AIDS at Workplace

• Employers may not discriminate against HIV-positive employees or victimise them in any way.
• No person may unfairly discriminate against an employee in any employment policy or practice (e.g. recruitment, appointment, remuneration, training and development, promotion, transfer and dismissal) on the grounds of his or her HIV status.
• No HIV-positive employee has to disclose his/her HIV status to his/her employer.
• Information and education on HIV and AIDS, as well as access to counselling and referral, should be provided in the workplace.

HPCSA guidelines on patients’ HIV status

Sharing information within the healthcare team about a patient’s HIV status is only permissible if the patient has given consent or if it is clinically indicated.

• Ethics, the South African Constitution (Act 108 of 1996) and the law recognise the importance of maintaining the confidentiality of the HIV status of a patient.
• The test results of HIV positive patients should be treated with the highest possible level of confidentiality.
• Confidentiality regarding a patient’s HIV status extends to other health care practitioners. Other health care professionals may not be informed of a patient’s HIV status without that patient’s consent unless the disclosure is clinically indicated. For treatment and care to be in the best interests of the patient, the need for disclosure of clinical data (including HIV and related test results), to health care practitioners directly involved in the care of the patient, should be discussed with the patient.
•  The decision to divulge information relating to the HIV status of a patient must always be done in consultation with the patient.

The HPCSA states: “In the management of an HIV positive patient it is important that the health care practitioner gives due consideration to other health care professionals who are also involved in the management of the same patient (eg where necessary, and with the patient’s consent, informing them of the HIV status of the patient).”

HPCSA - Disclosure in the public interest

• The National Health Act makes an exception to the rule of confidentiality if non-disclosure of a patient’s personal health information would pose a serious threat to public health.
• HPCSA guidance states that, for disclosure to be justified, the risk of harm to others must be serious enough to outweigh the patient’s right to confidentiality. If you judge that this is the case, you should attempt (if it is safe and appropriate) to obtain the patient’s consent first, but should go ahead with disclosure to the appropriate authorities if this is not forthcoming.
• Carefully document the reasoning beside your decision to disclose, together with details about any discussions you may have had with colleagues in the course of your decision-making

It is hence clear from all of the above that your ex-partner may not disclose or breach your rights to confidentiality and hence disclose your HIV status to 3^rd parties, even if he is a medical practitioner, when the intent or purpose of so doing has but one aim aimed and that is to destroy your rights to privacy and confidentiality. 

He may not disclose your HIV status to persons he suspects you might be engaging with even if the relationship is of a sexual nature unless he has proof that you are engaging sexually without having taken precaution to protect the person from exposure and/or based on the assumption that you are placing the person at risk. He can only do so from a medical practitioner’s responsibility to protect 3^rd parties point of view, if he knows for a fact and has evidence that you are not protecting the 3^rd party (sexual partner). 

He still can only do that after having discussed the matter with you first and attempted to provide you with counselling aimed at correcting your behaviour and only after providing such counselling, if you still refuse to protect 3^rd parties, may he warn you that he has an obligation to breach protect 3^rd parties and hence is considering disclosing your HIV status to the 3^rd party that he knows, for a fact you are placing at risk. Clearly this is not his intent and hence he is simply doing this, not in his medical capacity, but as an avenging ex-lover/partner. And this is against the law.  

It is also important to always remember that one’s right to privacy does not give one the right to place others at risk and hence, keep secrets or tell lies. Informing your sexual partners of your HIV status is your responsibility and you should always insist on taking precautions not to transmit HIV to your sexual partners.         

Love and light

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

Alan Brand Living Positively with HIV An Inspirational Story - Interview for Doctors Orders SABC TV3