By Professor Francois Venter
Recently, I took part in a chat show on Radio 702 to discuss how to disclose one’s HIV status to one’s sex partners. Hosted by Eusebius McKaiser, the show was vibrant, entertaining and challenging – made more so by the other guest, Thula Mkhize. Thula is an HIV-positive, heterosexual man in a discordant relationship (his wife is HIV-negative). Thula speaks openly and passionately about his sex life, and we chatted about the ethics of disclosing on the first or second or third date, among other things.
Dating when HIV-positive can be very tricky. When do you disclose your status to a new sex partner? How do antiretrovirals impact on your sex life? Why do we sometimes take risks that don’t seem rational? Relationships are hard, but can be so much harder when you have a background condition that is sexually transmitted.
The show went well; but I found some of the callers talking about their experience of disclosure surprisingly moving and upsetting. People were calling in, talking about the enormous impact of HIV on their sex lives, and of partners slowly pushing them away due to their status. This was not the violent, ignorant stigma that we easily identify and loudly denounce, but a more subtle, much more personal rejection. It reminded me of a good friend who is HIV-positive, who when she is about to engage in sex with a guy, says he often behaves as if he were doing her a huge favour, despite her being completely non-infectious on treatment. These little and not-so-little indignities can be devastating, and can prick holes in your self-esteem. Getting reliable support after disclosure is far from guaranteed.
A few weeks ago we lost Prudence Mbele, a beloved long-time activist living openly with HIV, who died of TB. Prudence was famous for her ‘pill holidays’ – a big no-no in HIV-land, as it leads to further immune damage. The idea of someone stopping their life-saving tablets – even temporarily – boggles the minds of most health providers. Her death triggered an intense media and Facebook/Twitter reaction, filled both with criticism at her choices as well as empathy, as people shared their own hard stories about taking antiretrovirals. Yet this notion of ‘pill fatigue’ affects lots of people in the HIV field and beyond, and generates a lot of chatter on social media.
Pill fatigue is a difficult concept to swallow, as a health professional. The daily tablet we use for HIV is small and getting smaller, has very few side effects, and is becoming safer all the time. Public health guidelines in South Africa recommend that a huge proportion of our population need tablets for diabetes, hypertension and cholesterol, among other ailments, especially as people get older. Pills are a part of normal life for everyone as they get older – so why should HIV-positive people complain of pill fatigue?
Some of those reasons relate to anxiety and depression and stigma, now strongly linked to delayed presentation for treatment, as well as adherence to their meds. Sadly, mental health issues are more associated with medical hot air than with any content; very few resources are allocated specifically to this area in either the public or the private sector, despite tons of data suggesting they are important. We have some very spirited and smart mental health professionals trying to change this, but there is in inertia in the current health system. This is also coupled with harsh societal views around mental health – depressed people are told to pull themselves together, think positive thoughts, be grateful – which are less than helpful to people experiencing sometimes devastating physical symptoms as a result of mental ill health. The truth is that mental ill health is probably just as stigmatised as HIV.
What does all of this mean, for someone with HIV? There are no magic bullets; but this is the best advice I can offer:
Identify your mental health symptoms
It’s a good idea to pay attention to your mental health, as well as your physical health. The first step is noticing whether you are feeling different – do you have feelings of hopelessness, persistent sadness, a lack of energy to get through your normal routine, or disrupted sleep or eating patterns? If so, and if these persist for more than a couple of weeks, you may be becoming depressed.
Do you have persistent and repetitive thoughts, worrying about your life or other problems? Do you notice physical symptoms such as shortness of breath, churning stomach or nausea, dizziness or rapid heartbeat, fear of new situations or people? If so, and these persist for more than a couple of weeks, you may be experiencing anxiety.
The best thing you can do is ask for support. It is sometimes very hard to reach out, especially when you may be afraid of people’s reactions. My experience though is that families and friends can be remarkably compassionate; and studies have shown that people who are open about their HIV status tend to get more support, have fewer issues with adherence, and generally appear to be happier. In one study, people with HIV who had good social support mechanisms reported the same quality of life, once they were on successful antiretrovirals, as people without HIV. Disclosing your HIV status can be scary, but it can also keep you healthy. Similarly, if you notice your mental health is wobbling, disclosing this to your friends and family can help keep you healthy.
Of course, this does not hold true for everyone. The world can be brutal and violent, families may use stigmatising diseases to play out internal politics, and not every spouse is going to be supportive. Use common sense, and choose your support network carefully. Equally, this does not mean you need to rush out and disclose to everyone the moment you get your diagnosis – I’ve seen quite a lot of people treating this period as a kind of confessional. Learning you are HIV-positive can be a huge shock; give yourself time to think it through, and decide when and who you want to disclose to.
American sex therapist Dan Savage famously says that disclosure on a date (or in any other situation) tells the other person only a small thing about you; whereas their reaction tells you everything you need to know about them. While it can be a shock to hear from a friend or loved one that they have HIV, or depression, or any other scary condition, there is no excuse for casually offensive opinions or hurtful comments. You do not have to stand for it, and you can be clear in deciding whether to continue a relationship with an individual who is rejecting or judgemental about your physical or mental health.
You can often find support groups through local churches, NGOs and community organisations. These don’t work for everyone, but can be of huge benefit. You might find that sharing your experiences and finding out more about HIV will be empowering, and this will help keep you both physically and mentally well. Also, you could talk about your mood; and if you are feeling low or anxious, it can be enormously helpful just to tell someone about it.
So pay attention to your friendship circle, family and community; and invest time and energy in these relationships.
Speak to your health professional
It is likely that you will receive very little clinical help concerning your mental health. Many health professionals are woefully under-trained around mental health, and you might find yourself brushed off if you try to talk to your doctor, nurse or even counsellor about this. If you feel strong enough, you can ask questions and insist that your health worker answer them; or if they can’t, that they do their own research and come back to you.
You have a right to mental health care, even though the reality is that South Africa is very under-resourced in this field. Your raising it could be helpful in transforming your own health worker’s understanding, too, and could contribute towards changes in broader mental health policy for everyone, over time. Also, challenge people on social media and in public, when they post trite messaging on mental health issues (the most annoying I have seen is a meme saying that people with depression don’t need tablets – just a pair of running shoes and a forest). They will be more careful next time.
Take your medication
Taking tablets every day for ‘conditions’ when you’re healthy is fast becoming a fact of life for everyone, for everything from high blood pressure to diabetes. Getting onto antiretrovirals, developing habits around swallowing tablets and staying on treatment, and finding the easiest system possible for getting your tablets, will move this aspect to ‘habit’ rather than being a constant reminder of the virus. If you acknowledge to yourself that pill fatigue might actually be systems fatigue – weariness around a health system that remains largely inefficient and unfriendly, and wastes so much of your time – this might help you to address your own negative thought patterns about taking your meds, and help you to stick to the regime. If you can, try to find a clinic that has good systems and helpful, competent staff. This will help you stay mentally healthy too.
If you are persistently depressed, it might also be possible to obtain anti-depressant medications on prescription. Primary healthcare clinics have access to anti-depressant drugs, and these can be a valuable addition to other counselling support. If you have the means, shop around for a professional you relate to – one who is sympathetic to mental health issues.
There are many similarities between taking anti-depressants and taking antiretrovirals. You need to take your meds consistently, without interruption, in order to achieve the best results. You may experience some side effects; but these can often be mitigated by changing the dose slightly, or just waiting for your body to get used to them. Many people take anti-depressants for months or years in order to keep their mood stable and enhance their mental health. There is nothing to fear from these drugs.
Use activism to get behind organisations advocating for better health services, for both HIV and mental health. In a recent study we did on truck drivers (most of whom were HIV-negative), rates of anxiety and depression were very high; we see similar prevalence among carers, low-income families living in poor housing, and inner-city dwellers. If you can, donate money to help them campaign, and to hire good staff. Become a vocal supporter of better mental health initiatives, wherever they exist. Challenge your health provider to take mental health seriously, and be bold about opening conversations with your friends and family about mental health. The World Health Organisation estimates that one out of every four people suffers mental illness at some point in their lives, so you are not alone.
You might find useful mental health information and support through one of the smartphone apps or personalised telephonic support lines that are becoming increasingly available. These may involve a cost, but there have been enough studies to show that they can be valuable. Watch this space to learn more about which ones are reliably effective.
What should HIV-negative people and healthcare workers be doing? I guess trying to avoid the trite ‘support’ statements – from ‘Well, at least you’re alive’, to the hideous ‘We will all die one day’ – would be a start. I have been at dinners in white, middle-class suburbia where someone is loudly opining about morality and its connection with HIV, not knowing that the couple across from me are my patients. The same holds for mental health issues – think before saying some stupid, stigmatising thing. There needs to be much more community awareness about the importance of unconditional acceptance and support of people on any kind of chronic medication.
If you’re a health professional, the best thing you can do is to educate yourself around mental health – and learn, firstly, how to accurately diagnose someone with depression or anxiety; and secondly, how best to work out a treatment plan. Mental ill health is rarely healed only through drugs, but more usually involves a comprehensive strategy encompassing talking therapies, good lifestyle interventions, removing stress, treating other health conditions, and prescription medications. Compassion, empathy and the ability to ask the patient questions about their unique experience of living in their own body are crucial. The last thing you should be doing is adding to stigma by putting your foot in your mouth. It is not a moral failing to suffer mental ill health, just as it is not a moral failing to be HIV-positive, or have any sexually transmitted infection.
As South Africans, there are many things that grind us down: corrupt politics; lack of jobs; increasing living costs; high rates of violent crime; poverty and poor service delivery; alcohol abuse; and family and relationship break-ups. If you also take into account the reality that too many of us experienced trauma because of the brutalising effects of apartheid, it is no wonder that mental ill health is so prevalent in our society. Sadly, we have been slow to acknowledge this and implement adequate policies to help mitigate mental illness.
Just as with HIV, every single one of us knows another person who is experiencing mental ill health. However, this may be hidden – due to stigma, shame, lack of understanding, and lack of adequate treatment. As a country, we achieved a lot when we started taking HIV seriously: through activism, scientific research, transformed health delivery systems and a lot of hard work at all levels, we managed to turn the epidemic around and make HIV a manageable condition. We can do the same with mental health, if we are motivated to do so.
Professor Francois Venter is a medical doctor who has been involved in HIV patient care, as well as guideline development and studies on new HIV treatments, for many years. He had lots of support from work colleagues and friends in editing this article.
For more information and resources on mental health, go to:
* This article was first published in a special print edition of Spotlight published ahead of the Treatment Action Campaign’s 6th National Congress held in August 2017. A PDF of that print publication can be downloaded here.