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Siyayinqoba Beat It! 2005 Episode 20 –

Mental Health and HIV

In this episode the Siyayinqoba support group examined how HIV can affect our mental health and how mental health challenges can be treated. About one out of every 3 people regularly making use of HIV/AIDS clinics show some signs of facing mental health challenges and may need help to overcome these. What are the signs of depression and other mental health difficulties? And what can we do to take better care of our mental health as people living with HIV and AIDS?

Jason Wessenaar: {Sesotho} [Hello and welcome to the Siyayinqoba Beat it! Support Group,] my name is Jason. In the Siyayinqoba Support Group we are all living positively with HIV. Each week we get together to talk about issues that affect our lives with HIV from death and loss to dental health. U-Siyayinqoba nguhlelo lwakho lokuphila ngcono nge-HIV. Uma unegciwane le-HIV {IsiZulu} [Siyayinqoba is your guide to living better with HIV. If you are living with HIV] or you have a partner, a family member or a friend who’s HIV positive, this programme is for you. This week we are talking about mental health and HIV. We all get depressed now and then; people living with HIV also go through depression. The depression could be caused by the denial of HIV status, stigma, fear and discrimination and these all affect the mental health of people living with HIV. But HIV itself can also affect the brain causing a change in behaviour and serious medical conditions. Sometimes medical help is needed, there are amazing medicines that can effectively treat mental health but the first step is recognising that one has a problem. Too often mental health problems are not recognised or correctly diagnosed. We need to understand how HIV can affect our mental health and how it can be treated. To help us with this topic is Dr Michelle Rogers, a psychiatrist working with people living with HIV and mental health. Welcome Dr Rogers. Siya is also our youth guest today, welcome Siya. But first Siyayinqoba went to Tygerberg Campus of the University of Stellenbosch where we met Dr Paul Carey, who is currently conducting extensive research on HIV related depression. Let’s hear what we found out.

The psychiatric effects of HIV

Tygerberg, Western Cape

Dr Paul Carey (Department of Psychiatry, University of Stellenbosch): There are a huge number of people who have depression and anxiety disorders, most particularly, one in three people in our HIV clinics have significant depressive symptoms. We are getting to the point where we believe one in three people who are coming into our clinic, actually need treatment for the depression with their HIV. Certainly there is evidence that direct infection of the virus on the brain can have various effects on brain function of which depression is one manifestation of that problem.

Voice-over: u-Dr Carey ukholwa ekutheni abantu ababonisa izimpawu zokugula ngengqondo okubangwa yi-HIV bangadinga ama-ARVs ngaphambu kwesikhathi samanje lapho abantu banikezwa nje ama-ARVs uma isibalo se-CD4 sehlele ku-200 noma ngaphantsi. {IsiZulu} [Dr Carey believes that people showing signs of mental illness caused by HIV may need ARVs earlier than the current situation where people are only prescribed ARVs once their CD4 count drops to 200 or below.]

Dr Paul Carey: Everybody is aware of just how prevalent HIV is and our concern as psychiatrists has been for a long time, how mental health is affected by this illness. And we’ve shown here, but it’s been shown all over the world, that mental illness is a very big part that affects a majority of people with HIV disease, not only in late-stage disease but in early-stage disease. Antiretrovirals are introduced relatively late-stage of the disease and we’re increasingly seeing people who have depression and other symptoms of what we call cognitive decline which involves memory and attention, as I was saying a little earlier. And we want to be sure that we know that these people have a more rapid progression to AIDS and it’s our belief that ARVs are more readily available in early-stage disease and that some of these illnesses, particularly the cognitive decline associated with HIV which very significantly impacts on productivity and quality of life, that these rates are much lower in patients who are having ARVs much earlier on in the disease process. Many people who are out there, who are depressed, who are battling with the stigma of the HIV diagnosis and now have all these emotional symptoms as well and feeling very unhappy and negative about where life is going and feel uncomfortable about disclosing their emotional status to the people they see in the clinic. And people really need to be encouraged to recognise what the symptoms are within themselves and that frequently clinics are really busy and you don’t get to the point of having those questions raised. Raise these questions with the people that you see in the clinic because you are much more likely to get appropriate treatment earlier and feel a whole lot better because of that. We have an effective treatment for depression, very effective treatments and people need to understand that.

Support Group

Jason Wessenaar: Dr Rogers, what is depression and how is it related to HIV infection?

Dr Michelle Rogers (University of Cape Town, Neuropsychiatry Project): Depression is a state of mind where people feel extremely sad, where they begin to feel hopeless, they feel lethargic and they feel disinterested in things that are going on around them. Sometimes one has a marked increase in physical symptoms rather than the actual feelings of sadness but just a sense of not being up to speed, feeling slow, feeling unwell. But in addition to that, we know that the immune state in HIV is such that one is exposed to infections and those infections themselves can precipitate depression or be associated with depression. Furthermore, the treatment that one uses for HIV, antiretrovirals, can be associated with depression as can all the other medications that we use to treat infections. HIV causes depression in that the virus itself goes into the brain, it damages the brain. After a while, it can be seen on an x-ray that the brain appears smaller. We know that the brain cells are damaged like this, and it creates a chemical imbalance. The brain does shrink with time because the virus destroys neurological tissue. HIV moves to the brain very early in the infection, nobody understands exactly how it causes depression or how it’s related to depression. There are theories about the relationships but it crosses the blood brain barrier and it sits there and you lose cells. So it destroys cells and that upsets the normal machinery of the brain. So little parts go missing over time

Lihle Dlamini: What are the most common signs and symptoms and what help can we give to someone who’s depressed?

Dr Michelle Rogers: Nendlela yothetha nabanye abantu itshintshile. Ufuna uhlala ecaleni, akafuni ukuncokola nabantu, akafuni udibana nabantu, ingathi inzima. [The way they communicate with people changes. They isolate themselves from other people] So it’s as if the person’s personality might have changed, that they’re different, that they’re withdrawn, that they are not as interactive. Ingathi aba-cope kakuhle, i-stress somsebenzi, ngaphambili babe-cope kakuhle kodwa ngoku kunzima. [Sometimes they feel they can’t cope with stress at work. Before they could cope very well but now they can’t cope at all.] So, new stresses might be much more difficult to cope with. They might complain abalali, bayasokola ukulala okanye bavuka ekuseni besatyhafile [they find it difficult to sleep.] And even if they do sleep, bafun’uphindela ebhedini. [they wake up still feeling tired and want to go back to bed. Amanye amaxesha bathi andifuni ukutya, andinamdla ukutya. [They feel that they don’t have an appetite.] So uba umntu uthetha ngezizinto masimamele sibabuze, [if someone talks about these things, you should listen to them and ask them] what is wrong because fan’bukhathazekile ingathi udakumbile phakathi, unexhala ikhona into ekhathaza kuwe [they may be troubled.] And then bazocinga ngawe bathi fanel’uba yilonto. [people are going to think about it, and realise that maybe they are troubled] {isiXhosa}

Jason Wessenaar: We’ll talk more about mental health and HIV after the break.

Jason Wessenaar: {Sesotho} [Welcome back to Siyayinqoba Beat It! Support Group] – the programme for everyone infected and affected by HIV. We’re talking about mental health and HIV. Siyayinqoba visited Feziwe, a mother at Nazareth House in Cape Town. Feziwe shares her experience of how her mental health was directly affected by HIV. Let’s take a look.

Treating psychosis related to HIV

Cape Town, Western Cape

Feziwe Qongqo: Uva kwam uba ndi-HIV positive last year, zange ndicinge kakhulu okanye ndikhathazeke, zange ndichaphazeleke kakhulu qha umntu endandimcinga ngumama wam ne-family yam uba bazondithatha njani. Ndithi nge-1st zika-June xa ndiyobhala ii-exams zam ndaqalisa ukugula xa ndibuy kanye kei-exam room. Ndazifilisha ndi-weak aph’endleleni, ndahamba ndangena kwii=office ezakifitshane ndacela uba mandifowune, ndabizelwa i-ambulance ndafowunela abazali bam, ndasiwa esibhedlele. {isiXhosa} [When I found out that I’m HIV positive last year, around March, I didn’t think about it a lot and I wasn’t worried. The people I was worried about were my mother and my family. It was on the 1^st of June when I was writing my exams that I started getting ill. On my way home I started getting weak and I ran to the nearby offices where I asked to phone an ambulance and my parents, then I was taken to hospital.]

Noxolo Qongqo (Feziwe’s mother): Xa ndifika pha, ndafika uFeziwe ezigqumile, ethetha kakhulu, elila. Xa ndimphakamisa ndithi “Feziwe, uyandazi? Ndingumama wakho njena.” Naxa ndandithetha naye, ndandimbona ukuthi iingqindo zakhe azikho apha kulento ndiyithethayo. {isiXhosa} [When I got to the hospital, I found Feziwe with blankets over her head. She talked a lot and she cried. I lifted her up and asked if she knew who I was. I said to her: “I’m your mother”. When I was speaking to her I could see that she didn’t understand anything.]

Dr Michelle Rogers: Bendiqala ukudibana no-Feziwe ugula kwakhe e-Somerset napha e-Robbie Nurock Clinic. U-Feziwe kwelaxesha ebesiva amazwi, kubekhona ixesha esoyika abantu kakhulu, ebengayazi uba wenzani. Ukuqala kwakhe ukufumana i-treatment ye-HIV ne-treatment yogula ngengqondo ibisinceda kakhulu kaloku umama wakhe ebeme ecang’kwakhe, em-support kakuhle, amkhumbuze amapilisi. {isiXhosa} [I met Feziwe for the first time when she was sick at Somerset Hospital and Robbie Nurock Clinic. At that time Feziwe was hearing voices and she was afraid of people. She didn’t know what she was doing. When Feziwe got her ARVs and treatment for her psychological problem she received a lot of help from her mother who was very supportive. Her mother reminded her to take her pills.]

Noxolo Qongqo: Lo gqirha wathi xa emxilonga, kulapho ke wafumanisa into yoba uchatshazelwe yile-meningitis. Bathi uxhuzulela engqondweni. {isiXhosa}

[After the doctor examined her she told us that Feziwe had meningitis that affected her brain.]

Feziwe Qongqo: Ngoku ndanditesta, i-CD4 count yam yayingu-34, kungela xesha ndandifila ndi-weak. Uziqala kwam ii-ARVs yayingu-4, izokonyuka to 317. zii-ARVs ke ezi, yi-3TC le, yi-d4T le, ize ibeyi-Efavirenz ke le. [At the time when I tested for HIV my CD4 cell count was 34, and I was feeling very weak. When I started taking ARVs my CD4 cell count was 4, and now it has risen to 317. These are my ARVs; this is 3TC, d4T and Efavirenz.]

Dr Michelle Rogers: Uba umntu uqala ukugula ngengqondo and unayo i-HIV, mabakhawulezise ukufumana i-treatment ye-HIV. {isiXhosa} [When a person starts having psychological problems and they are also HIV positive, they must make sure they get immediate treatment for HIV.]

Feziwe Qongqo: Ngoku ndiphile qete, akho nento endiyivayo. {isiXhosa} [I’m very healthy now and there’s nothing wrong with me.]

Support Group

Busisiwe Maqungo: Amaxesha amaninzi asikwazi ukohlula phakathi kwe-stress ne-depression, andazi noba ukhona umehluko okanye ziyinto enye. Ndicela undicacisele umehluko phakathi kwe-stress ne-depression. Owesibini uthi kutheni lento i-depression … i-mental health ndiyazi ingabantu abasendleleni bachola amaphepha, babizwa ngamageza. Kutheni kengoku izawumataniswa nayo? Abe engumntu osavukayo esiya emsebenzini, akhwele i-taxi. {isiXhosa} [Most of the time people don’t know the difference between stress and depression. I don’t know if there’s a difference or not. Please explain the difference between stress and depression. My second question is: Why is it called depression? As far as I know mental health is associated with having a mental condition and that person goes around picking up newspapers in the street. We call them crazy. So why is depression associated with mental health while that person still has their normal daily routine?]

Dr Michelle Rogers: I think you raise two very important points Busi. The first is that sometimes it can be quite difficult to separate out symptoms or understand whether you are stressed or whether you have gone beyond that and are feeling very depressed. I think the difference with depression is a feeling of sadness and hopelessness, of more than just being overwhelmed, whereas when we’re stressed it’s usually that feeling of being anxious, you usually understand what’s making you stressed and you know that once that stress is over, you can probably cope again. Whereas depression is something slightly different in that even when the stress is gone, you’re still left with the stress of being miserable, of being sad, of being alone and isolated. Mental health is something that can affect absolutely anybody, it can be the person who’s unemployed who lives on the street picking up papers to the businessman sitting in his office, absolutely anybody can be affected by depression or in fact other mental health issues. Mental health includes things like anxiety; we include things like psychosis or mania, bipolar disorder you might have heard about. We include things like suicidelity in people who’ve tried to kill themselves. Being suicidal is something that is very real, it’s an awful experience to have and it needs to be managed aggressively. So if one is having those kinds of feelings where life is just so bad that you want to kill yourself or you want to do something that puts you in danger, it’s important to seek treatment. Substance abuse and substance use is also included under the whole gamete of mental health issues. So I think we need to lose the idea that mental health only affects people who are down and out, it’s so much like the idea that alcoholics are down and out. But it can affect anyone of us and I think the difficulty is that there is such a stigma so associated with it, so we are reluctant to talk about our mental health issues and so we don’t get treatment. And the less treatment we get, the worse symptoms we get, the more socially withdrawn we get, the less we’re able to work. It leads one to a progressive spiral downwards.

Jason Wessenaar: When is likely that every person living with HIV will develop dementia?

Dr Michelle Rogers: Your AIDS defining presentation, although it’s the symptom that takes you to the class where somebody says you need antiretrovirals because you’ve got AIDS, so one in ten people present with a psychiatric symptom as the AIDS defining event. And so that is why it’s very important to understand that mental health can’t be separated out from the physical health and the physical wellbeing of somebody who’s got HIV because it may, and I’ve looked after patients who’ve been absolutely well and the first symptom has been psychosis. That is an indication to get in and treat them as soon as possible.

Anthony Fernandes: I wish there was more words to describe depression because it is so much bigger, it’s something that’s internally happening. With HIV on top of it, you just feel more alienated so when people are damaging you avoid them like a red flag.

Dr Michelle Rogers: Socially isolating yourself and avoiding people may not mean that you’re depressed. Being aware that somebody is withdrawn and socially isolated is a starting point of which to say maybe we need to explore this thing further. Some people cope like that, they have a big stress in their life, they withdraw, they become a little bit isolated until they’ve resolved, accepted, perhaps a little bit of inner healing and they are able to come out again and start cheering and engaging with people.

Jason Wessenaar: I used to do work with prisons and I think my work was quite stressful also because I was seeing a lot of people die. And I think I got to a point where I couldn’t take it anymore. So what my colleagues did, they took me to a psychiatrist who then prescribed medication. Now the thing with this medication is that I took it for three days but I felt nothing, I couldn’t be happy, I couldn’t be sad, I was just numb throughout. What is this medication supposed to do?

Dr Michelle Rogers: Antidepressants, there is a broad group of drugs that fall under antidepressants. Now what happens really is that the hormone levels are pushed up by the antidepressant. Antidepressant works in various ways to push up those hormone levels. What’s important to understand is that it doesn’t happen immediately, one often only feels the benefits starting after a week or ten days and ready to get to the point where maximum benefits are starting to kick in, we’re looking at four to six weeks. So it’s important when one gets medication to ask your doctor how the side effects work and how I expect to feel over the next few days: “Am I going to be better by next week?” You know I think if you come away from your doctor’s rooms understanding that by next week I’m still probably going to be feeling poorly, that hopefully I’m going to be sleeping better and maybe my energy levels are going to start coming back, you can deal with that. But if you go out believing you’re going to be better by tomorrow and you aren’t, that creates enormous stress and distress.

Jason Wessenaar: But isn’t there a danger in taking antidepressants that people can become addicted to them and basically use them to cope with everyday life because my understanding is that you can only take them for a short period of time or for the time that they’re prescribed.

Dr Michelle Rogers: There isn’t firm evidence suggesting that antidepressants are addictive but having said that, we do know when people discontinue their antidepressants may have a discontinuation syndrome. In other word, they feel the effect of that hormone or that extra of that hormone is not there, but that is something that settles over a few weeks. And for that reason we tend to ween people off that medication rather than discontinuing it suddenly.

Siyabulela Baleni: Uba uthatha i-antidepressants for six months, ngathi ndi-right ungazigqibi i-six months uyeke, uphinde uberongo, azi-resisti xa uphinde uzithatha? {IsiXhosa} [If you take antidepressants for six months, get better and stop and when the depression returns you start the medication again, doesn’t that create a resistance to the medication?]

Dr Michelle Rogers: We don’t think that you develop resistance to the drug but if you leave it untreated, the depression might become resistant to treatment.

Jason Wessenaar: {Sesotho} [We’ll continue talking about mental health when we come back.]

Jason Wessenaar: Welcome back to Siyayinqoba Beat It! Support Group – the programme for everyone infected and affected by HIV. We’re talking about HIV and mental health.

Lihle Dlamini: I have a friend who had to start on ARVs but then they found out that she had depression and they had to put her on antidepressants first before ARVs. Kubaluleke ngani ukuthi baqale bamfake kuma-antidepressants before bamfake kuma-ARVs? Ama-ARVs ebezomenza ibe worse i-depression yakhe? {IsiZulu} [So why is it important to start with antidepressants before going on ARVs? Would the ARVs have made the depression worse?]

Dr Michelle Rogers: We know that one is not well mentally, whether you’re depressed or psychotic or bipolar disorder, the risk in terms of not being compliant with your ARVs is much higher. So psychiatric illness pre-disposes patients to not being compliant to ARVs. And that is profound implications in terms of later responsiveness to those same drugs, to losing use of your first line drugs. So what you’re describing in your friend is probably that they wanted to be certain that she was going to be able to comply and take her medication correctly, eat correctly et cetera. So I would assume that’s probably what was happening in that case. Mental health is so important because when you’re not mentally well, the risk of non-compliance is huge and in HIV that is a crisis because it means that the virus is just going to be resistant and then you run into problems. So I think that is a very important issue, not only in depression but in a variety of mental illnesses. And I want to tell you as carers because all in your own way, are caring for people who are living with a chronic debilitating illness and you’re bringing hope to others, that you too all need care, that you need to look after your own mental health in order to be able to look after the mental health of others. So it’s actually crucial that you address that in the kind of work that you are doing, in the same way I, as a psychiatrist dealing with people’s mental health issues all day, need to acknowledge the kind of work that I do. And it’s much more so for you because you’re dealing with mental health issues, social issues, stigma, work related, unemployment, the social situation in the country, access to care, antiretrovirals and so it goes on. I think you know much better than I do, the kind of struggles that you’ve had. So I would urge you that if there’s one thing people who are out in the communities but also for panel, if you are involved in caring for others it’s very important that you care for yourself in that process. And likewise for those in the communities doing that kind of work that involves giving an enormous amount of themselves.

Jason Wessenaar: {Sesotho} Thank you Dr Rogers, Siya, the support group and the viewers at home. Today we leaned that we should be aware of signs of depression because it is not always obvious. Leaving depression untreated can cause bad adherence to ARVs. If you’re not sure you have depression, ask your doctor or nurse for advice. We hope that you have enjoyed the show and that you’re feeling the Siyayinqoba Spirit, that together we can Beat It! [Join us again next week on Siyayinqoba Beat It! Support Group. Until then stay healthy and remember we can beat HIV.

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