When John Kawalya was diagnosed with HIV, life suddenly seemed to lose its meaning. The 20-year-old student struggled to accept what the diagnosis meant for his future. He became withdrawn, frequently suffered stress-induced headaches and began losing interest in school. His academic performance deteriorated and, at his lowest point, he contemplated suicide. Although he was still attending school, Kawalya was struggling to remain there. His experience illustrates a less visible challenge in the HIV response: the psychological burden that can accompany living with a chronic condition. For some people, an HIV diagnosis can trigger shock, fear, shame, uncertainty and worries about rejection.
Even after accepting their status, concerns about disclosure, relationships, discrimination, treatment and the future can continue to weigh heavily. For others, the emotional distress may develop into a mental health condition such as depression or anxiety. And when depression sets in, the consequences can extend beyond emotional wellbeing. The World Health Organisation (WHO) says people living with HIV are at increased risk of mental, neurological and substance-use disorders. Mental health conditions can, in turn, affect general health, adherence to antiretroviral therapy (ART) and retention in HIV care. In Uganda, a systematic review of studies among people living with HIV found a substantial burden of depression, highlighting the need to address mental health alongside HIV treatment.
When HIV becomes more than a medical diagnosis
Depression is more than ordinary sadness. It can involve persistent low mood, loss of interest in activities that were previously enjoyable, difficulty concentrating, changes in sleep and appetite, fatigue, hopelessness and, in severe cases, thoughts of death or suicide. Not everyone living with HIV will develop depression.
However, the pressures associated with the condition can increase vulnerability, particularly when combined with other difficulties such as poverty, relationship problems, stigma, isolation or lack of social support. Milly Katana, an HIV activist and person living positively with HIV, says mental health remains a largely overlooked barrier to effective HIV care, particularly among adolescents and men. ‘Untreated depression can erode self-esteem and lead to interpersonal conflict, social isolation, poor health, financial instability, substance abuse and high-risk sexual behaviour,’ she says. These problems can reinforce one another.
A person who feels ashamed or hopeless may withdraw from friends and family. Someone who isolates themselves may lose access to the emotional and practical support that could help them cope. They may also become less likely to attend a health facility or take their medication consistently. Milly Katana, who is board chair of StrongMinds, a non-profit organisation providing depression treatment in low-resource communities, says some men living with HIV only reach health facilities when their problems have become severe. ‘They show up at the health facilities when things have gone out of hand, and when they get into care, when they are depressed, the likelihood that they will adhere to treatment is less than optimal,’ she says.
The treatment connection
HIV treatment has transformed the disease from what was once widely considered a fatal condition into a manageable chronic illness for people who have access to and consistently take effective treatment. But treatment requires continuity. ART works by suppressing HIV. For treatment to remain effective, patients need to take their medicines as prescribed and remain engaged in care. Depression can make this difficult. Vincent Mujune, country director of StrongMinds, says depression can become a predictor of poor treatment outcomes because of its effect on a person’s ability to remain engaged in care. ‘The moment depression sets in, it is highly predictable that your treatment outcome for HIV are going to significantly dwindle,’ he says.
He explains that people experiencing depression may struggle to maintain treatment routines, which can affect viral suppression. ‘When a person gets depressed and they are in the middle of their care process, they will struggle to remain adhering to treatment,’ he says. The problem is not that every person with depression will stop taking their medication. Rather, depression can make the routines required to manage a lifelong condition more difficult to maintain. Poor adherence can, in some circumstances, contribute to treatment failure and drug resistance, potentially limiting future treatment options. This is why identifying and treating depression can be an important part of maintaining good HIV treatment outcomes.
The burden of stigma and silence
For many people living with HIV, one of the most difficult questions is not necessarily how to take their medicine, but who to tell. Mujune says depression can push people further into isolation, making disclosure even more difficult. ‘It is a sickness of loneliness which keeps you in the corner. It keeps you by yourself and thus incapacitates you to disclose your status for the purpose of getting help and support from the people who are around you,’ he says. This can create a difficult cycle.
A person may need support but fear being judged if they disclose their HIV status. They remain silent, become more isolated and lose the social connections that could help them cope. For adolescents, the burden can be particularly complicated. A young person may already be trying to navigate relationships, sexuality, school, friendships and their identity while simultaneously dealing with a lifelong health condition. Suzan Adikin, quality assurance coordinator at StrongMinds Uganda, says some adolescents may turn to alcohol, other substances or risky sexual behaviour as a way of coping with a difficult diagnosis. ‘They may isolate themselves from friends and family, who would be the protective factors to support them during this time of need,’ she says. The result can be delayed healthcare seeking, poor adherence and further social and health problems.
It is not only about the virus The relationship between HIV and depression is not driven by one factor. There are social, psychological and biological factors that can affect a person’s mental health. A relationship breakdown, loss of employment, financial difficulties, family conflict, stigma or fear of disclosure can all add to the emotional burden. Mujune says these challenges can also affect a person’s livelihood. For someone working in Uganda’s informal sector, mental distress can quickly become an economic problem.
A trader, for example, may depend entirely on the energy and concentration they put into their business each day. Depression can leave someone exhausted, distracted and less productive. If income falls, the person may struggle to meet basic needs, including transport to a health facility. That can create another cycle: poor mental health affects work, reduced income increases stress, and increased stress can further worsen a person’s mental wellbeing. For a salaried worker, the financial effects may initially be less obvious because income continues to come in. But prolonged depression can still affect productivity, relationships and the ability to function effectively at work. The effects, therefore, extend beyond the individual. Families can experience strain. Relationships can suffer. Children may be affected when a parent becomes withdrawn or unable to meet their usual responsibilities.
The case for talk therapy
Mental health support does not always begin with medication. One approach being used by StrongMinds is interpersonal group therapy (IPT-G), a structured, time-limited form of talk therapy delivered by trained lay counsellors in communities and schools. WHO recognises psychological and psychosocial interventions as important components of mental health care and HIV services. Katana says talk therapy gives people an opportunity to identify experiences and relationships contributing to their emotional distress and develop practical ways of coping. ‘It is not chemical intervention. That is why we specifically call it talk therapy,’ she says.
‘It is not giving you medicine but helping somebody to talk through these things and slowly by slowly the aggrieved can improve.’ The aim is not necessarily to change every difficult circumstance in a person’s life. Instead, therapy can help someone understand what they are experiencing, develop coping skills and find healthier ways of responding to difficult situations. Mujune says some people may experience a relapse because the circumstances that contributed to their depression can return. However, he says people can use the skills acquired through therapy to remain well for longer and cope better when difficulties arise. Talk therapy, however, should not be presented as a replacement for medical care in every case. Some people with depression may require additional treatment, including medication or specialised mental health care, depending on the severity of their symptoms.
Finding his way back
For Kawalya, group therapy initially felt uncomfortable. He was suspicious of the idea of discussing his problems with other people. But that changed when he realised that other members of the group were experiencing challenges similar to his own. He gradually became more involved in the weekly sessions. Other group members encouraged him to live positively, adhere to his HIV medication and engage in productive activities. As his symptoms improved, Kawalya also began supporting others, sharing his experiences and offering suggestions.
Through therapy, he learnt new coping skills and ways of dealing with his problems. Slowly, school became interesting again. He became more socially engaged, regained his focus and improved academically. ‘I have even become more regular at school and I now have a higher propensity to complete my level of education because I am now more focused. StrongMinds has transformed my life,’ Kawalya says. His story demonstrates why mental health cannot be treated as an optional extra in HIV care. A person may have access to ART, but if depression, stigma, isolation or hopelessness prevents them from engaging fully with treatment, another battle is taking place outside the clinic.
Making mental health part of HIV care
Uganda’s HIV response has made major progress in diagnosis, treatment and viral suppression. But the experience of living with HIV involves more than laboratory results and medication. People also have relationships, families, jobs, fears and hopes. Addressing those realities is, therefore, an important part of keeping people healthy and in care. The World Health Organization recommends integrating mental health services into HIV care, including support for depression, anxiety, substance-use disorders and other mental health needs. For people living with HIV, that integration could mean that a conversation about mood, relationships, isolation or substance use becomes as routine as asking whether someone has taken their medication.
It also means health workers, families and communities need to recognise that emotional distress is not a sign of weakness, laziness or failure. A person who misses a clinic appointment or struggles to take their medication consistently may not simply be ‘non-compliant’. There may be something deeper happening. They may be struggling to get out of bed. They may be afraid to tell someone about their status. They may have withdrawn from friends and family because they feel ashamed or misunderstood. They may be overwhelmed by financial problems, relationship difficulties or uncertainty about the future. Or they may simply have lost hope. This is why asking whether someone is taking their medication may not always be enough.
Health workers may also need to ask how the person is sleeping, whether they still enjoy the things they once did, whether they feel connected to other people and whether they are coping emotionally. For people living with HIV, being asked ‘How are you coping?’ can open the door to a conversation that might otherwise never happen. And that conversation can be the beginning of getting help. Kawalya’s experience shows what can happen when that help is available. He did not stop being a person living with HIV. His diagnosis did not disappear. What changed was how he understood and responded to his circumstances.
Through therapy and support, he regained his confidence, returned his attention to school and became willing to support others facing similar challenges. That is why HIV care cannot stop at viral suppression. The goal should also be to help people live well with the condition; to remain connected to their families and communities, continue their education or work, maintain healthy relationships and have the emotional support needed to stay in care. Because treating HIV may keep the virus under control. But helping someone cope with living with HIV can help give them the strength to keep going.