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Mental health problems

Emotional distress

Life involves emotional stresses and strains. Being diagnosed with HIV, and living with it, will at times cause such stresses, and some aspects of your life will become more complicated – and possibly stressful – because of HIV.

Finding out that you have HIV can lead to a wide range of feelings. It is common to feel fear (including fear of illness or dying), worry, concern about what other people will think, guilt, shame, embarrassment, anger and sadness after a diagnosis. Some people feel numb, and others feel a sense of relief that they have finally found out about their status.

You may question how your life will be living with HIV; it can be easy to assume the worst. However, the feelings people have about HIV can change over time, so your initial response to finding out that you have HIV is unlikely to last. Many people find that they gradually come to terms with having HIV, although some aspects of being HIV positive can still make them feel anxious or distressed.

Attending regular medical appointments, experiencing ill health, starting or changing treatment, disclosing your status or starting a new relationship can all be sources of anxiety or cause emotional distress. Sometimes these can involve a revisiting or reconsideration of feelings about life with HIV. In the end, many people with HIV will find that their emotional wellbeing is affected by life with the virus from time to time, no matter how successful an adjustment they have made to their diagnosis.

Remember that it's perfectly acceptable to have feelings that you find difficult. Although it can be easier said than done, don't feel bad about feeling bad. Acknowledging and accepting your feelings is an important first step to working them out. Even though it can be hard to feel this way, experiencing emotions like anger, anxiety and fear are often normal responses to events during your life, including some of the adjustments you may have to make because of HIV.

It’s also important to know that there’s a lot you can do to look after your emotional wellbeing.

Talking about your experiences and feelings with a loved one, friend or another person with HIV can be a big help. When you are finding your thoughts and feelings difficult to understand or work through, psychological therapies can be helpful. Your HIV clinic should be able to help you find a suitable therapist if they don’t offer such services themselves. (See page 38 for more help with finding a therapist.)

Looking after the basic requirements of life – getting enough sleep, eating properly and managing stress – provides an important foundation for your emotional wellbeing. So if you are having problems with these daily activities for any reason, it may be good sense to ask for professional help. 

Trouble sleeping is the most widely reported psychological disorder in the UK, affecting 30% of the population. Many people with HIV report difficulties relating to sleep (it was identified as the third most significant issue in a survey of people living with HIV, with 70% of respondents reporting some problems with sleep). Difficulty going to sleep or staying asleep can be the result of worry, stress or mental health problems, or the cause of them.

For many people, having a drink or occasionally using recreational drugs is a pleasurable part of life. However, alcohol and mind-altering drugs are also used by many people for short-term relief when they are experiencing difficult feelings. They might offer temporary relief, but in the long run relying on them is likely to make your feelings harder to deal with. Prolonged and excessive drinking and drug-taking can also damage your physical health and affect how your body absorbs anti-HIV drugs, as well as making it harder to remember to take your HIV treatment.

Feeling isolated can be a source of distress, or can make feelings of distress worse. Finding ways of interacting with other people in ways that you are comfortable with is important to good emotional wellbeing. Many HIV support organisations offer one-to-one and group peer support. You may also want to join non-HIV-related organisations, based on your interests, to meet other people and help you feel less alone.

Taking part in productive and enjoyable activities can help promote a feeling of wellbeing. For example, volunteering in your local community – perhaps with a charity or community group – can be a good way of meeting people, developing new skills and increasing self-esteem and confidence, as well as of helping others. You can find out more about volunteer work and see what types of opportunities are available, on the Volunteering England website:

Having interests that you find engaging and rewarding (in any way) are important. Setting goals for yourself can give you a sense of purpose. It's most helpful if these goals are realistic and can be achieved by taking small, measurable steps.

Some people find that faith or spirituality are important sources of comfort and stimulation. Prayer, meditation or quiet reflection can be helpful for reducing stress and loneliness. And religious or cultural communities can be key networks of support and social interaction.


Anxiety is a feeling of apprehension or dread that bad things may happen, causing both physical and psychological effects. It’s not always a bad thing: it can be a very appropriate and useful reaction. As the body’s natural response to a threat or challenge, it can help you react quickly to a situation.

Life with HIV can at times involve worry and uncertainty. Anxiety can be a natural response to a new development in life when you are not familiar with it.

However, when anxiety becomes a long-term problem that affects quality of life or restricts your choices, psychological support may be needed. 

Symptoms of anxiety can include sweating, breathlessness, a racing heartbeat, agitation, nervousness and headache. Sometimes, people can think they are having a heart attack. People may worry constantly, feel strongly that they cannot cope, be irritable, weepy, unable to relax or to concentrate, and inclined to think that the worst will happen. Anxiety often occurs along with symptoms of depression, but can also happen by itself.

If your anxiety is caused by specific problems – concerns about money, housing or taking HIV treatment, for example – getting practical advice about how to approach these difficulties may well provide a solution. There are techniques you can learn to help control anxiety and talking to family and friends can help.

Psychological therapies may also prove useful. Having some form of ‘talking therapy’, such as cognitive behavioural therapy, can help provide the skills and practical techniques to understand the origins of anxiety and to manage it better. Relaxation techniques are also used sometimes to help people with anxiety.

Anxiety can occur with depression, so it can be treated by antidepressants and other medication. It may be that you will be offered ‘talking therapy’, as this is now the preferred method of professional help for mild to moderate levels of anxiety and depression. But no one treatment is the right one for everyone, and your medical doctor should discuss the different options with you.

Massage, acupuncture, other complementary therapies and exercise can sometimes relieve some of the symptoms of anxiety. Cigarettes, stimulants (such as coffee) and depressants (such as alcohol) may seem to be helpful but usually increase the symptoms of anxiety, so it helps to avoid them. Eating a healthy diet and getting plenty of sleep can also make a big difference to your ability to cope with stress.

Drugs such as benzodiazepines, including Valium, used to be widely prescribed for the treatment of long-term anxiety. Their use is now restricted because they are addictive and are less effective the longer they are used. However, they are still used to treat short-term periods of extreme anxiety and panic with little risk of addiction. Your GP can advise you about this sort of medication, although psychological therapy should generally prevent you needing medication. Remember, if your GP does prescribe these drugs, consider telling them about any HIV treatment you are on, or talk to someone at your HIV clinic, to avoid interactions between the drugs.


People often say that they are ‘depressed’ when they are feeling down or sad. Often this is probably a natural fluctuation in mood, or an appropriate reaction to a distressing event or situation – everyone will experience this at times.

However, depression is a recognised mental disorder and is treatable. Mental health professionals often talk about ‘clinical depression’ or ‘major depression’ when they are referring to this condition. It is thought that depression occurs much more frequently in people living with HIV than in the general population. Surveys of people living with HIV in the UK have shown that high numbers of HIV-positive people report experiencing depression and anxiety.

It is also worth remembering that gay men and African people, the two groups most affected by HIV in this country, already have higher rates of depression than the general UK population. Some research suggests that people with HIV and hepatitis C co-infection also have high rates of depression (the treatment for hepatitis C can also cause depression).

One of the most common signs of depression is feeling fatigue, tiredness and low energy. However, this fatigue or tiredness might be associated with some sort of physical condition, such as low testosterone levels or hypothyroidism. It’s essential you ask for a thorough physical check-up if you are struggling with low energy.

Some women who are pregnant or have recently given birth can be more prone to depressive symptoms – this generally starts very soon after the baby’s birth and only lasts a short time but it can also start during pregnancy or some time after the birth, and be more severe and longer lasting. Paying attention to a woman’s emotional state is an important part of health care during and after pregnancy and childbirth.

Causes of depression vary, but can involve biological, psychological and social factors. Illness, stress and social problems often cause depression to develop. For example, the physical effects of HIV disease progression itself can trigger depression. Experiencing a number of significant losses in life in a short period of time can also trigger a depressive episode. It has also been suggested that some people may be vulnerable to developing depression and other mood disorders simply because of their genetic make-up. In many cases, however, there might be no obvious or identifiable cause for the depression.

Whatever the causes may be, depression can become very entrenched. It can even become dangerous if a person becomes suicidal. So paying attention to the signs of depression and doing something about it can be life saving.

Depression is characterised by the presence of some or all of the following symptoms, for some or all of the time, and for a period of weeks or even months (rather than for a few hours or days): low mood, crying spells, apathy, irritability and difficulties with concentrating. Symptoms can also include constant fatigue, sleeping problems (difficulty in falling or staying asleep, or oversleeping constantly), and changes in eating habits (loss of appetite or an inability to control overeating).

A key feature of depression is the loss of pleasure in activities that are usually meaningful and enjoyable. Reduced sex drive, social withdrawal and isolation are also signs. Feelings of low self-worth and inappropriate or excessive feelings of guilt are also symptoms of depression which can include thoughts of death, self-harm, or suicide.

Feeling depressed can also affect how you feel about HIV treatment and your ability to take your drugs as prescribed (‘adherence’), so it’s important that you and your doctor talk about how you feel. Other staff at your HIV clinic can also help you with adherence if you are finding it hard. You can find out more in NAM’s booklet Taking your HIV treatment.

Treatment for depression

It is important to get professional help if you think you are experiencing a number of these symptoms. Try talking to your partner, a good friend or a family member about how you feel. You should not think that you are weak, unstable or ‘mad’ if you ask for help because you think you might be depressed. In fact, it’s a sign of strength that you are reaching out for some help to improve your situation.

Exercise can help with mild depression. It is something you can do yourself, but your GP may also be able to help by prescribing exercise and referring you to a programme at a local gym or health centre.

If depression is not treated, it will not go away permanently. The feelings may lessen, so that you feel better, but it’s likely that you will have another episode of depression in the future. Psychological treatments for depression are very effective and can reduce the chance of depression recurring.

If you think you need professional help, contact one of the organisations listed in the section Where to go for emotional and mental health advice and support. Your GP or HIV doctor will also be able to help. HIV doctors are very used to working with people who are experiencing depression. Many of the large HIV clinics have specialist mental health teams including psychiatrists, psychologists and mental health nurses (see Professional support). Your GP will also be able to help with diagnosis, treatment and referral to specialist services (see NAM’s patient information booklet HIV, GPs & other primary care).

Seek help immediately if you are thinking of harming or killing yourself. Your GP should be able to arrange some immediate help during working hours. You can go to your local accident and emergency department at any time of day or night, where you will be able to see a mental health specialist for assessment and help. (See page 36 for other sources of help.)

If you suffer from depression, your doctor may recommend that you take antidepressant medication. These drugs relieve the symptoms of depression by correcting chemical imbalances in the brain. They do not cure depression but they help you with the symptoms so you can get into a better state to start helping yourself.

Drug treatment for depression

There are four main classes of antidepressant drugs:

  • tricyclics
  • MAOIs (monoamine oxidase inhibitors)
  • SSRIs (selective serotonin re-uptake inhibitors)
  • SNRIs (serotonin and noradrenaline re-uptake inhibitors, also called serotonin and norepinephrine re-uptake inhibitors).

If your doctor prescribes an antidepressant, it is most likely that it will be from the SSRI class. Drugs in this class, which includes fluoxetine (Prozac), have fewer side-effects and interactions with other medications. In particular, the antidepressant citalopram (Cipramil) is often used because it has few interactions with anti-HIV drugs and generally doesn’t cause many side-effects. It’s important the doctor prescribing the antidepressant knows about any other drugs you take, including anti-HIV drugs. 

If your GP suggests that medication may be helpful to help improve your mood, it is a good idea to inform them if you are on HIV medication, to ensure that one drug does not reduce the absorption of the other. If this is difficult, make sure you inform your HIV consultant of any medication your GP has prescribed in case your HIV medication needs to be reviewed.

Antidepressants can take between two and twelve weeks to have a significant and lasting effect, and your dose may need to be increased for the drug to be effective. Like all medicines, they can have side-effects, although not everyone will experience them.

SSRI antidepressants have some side-effects, particularly in the first few weeks. Side-effects at this time can be particularly difficult to cope with because of the time the medication can take to relieve the symptoms of depression. Make sure you discuss any concerns about side-effects with your doctor.

The herbal antidepressant St John’s wort interacts with anti-HIV drugs in the protease inhibitor (PI) and non-nucleoside reverse transcriptase inhibitor (NNRTI) classes, leading to low levels of the anti-HIV drugs in the blood and risking the development of drug-resistant HIV. For this reason, you must not take St John’s wort if you are taking a protease inhibitor or an NNRTI.

The length of time you need to take antidepressants will vary with your individual circumstances. You may start to feel a lot better a few weeks after you start taking them, but it is highly recommended that you remain on antidepressants until you have finished your course of treatment, as you may become worse again if you stop too soon (this is usually at least six months if you are taking them to treat your first depressive illness, or longer if this is not your first episode of depression).

If you feel strongly about reducing your dosage of antidepressants, talk to your GP so the reduction in dose can be medically managed in case it causes side-effects.

Antidepressants can be a vital tool in recovery from depression. But they are only one of the tools at your disposal. There is growing clinical evidence that ‘talking therapies’ can be just as effective, or even more effective in some circumstances. Guidance in how to find a counsellor, psychotherapist or psychologist can be found in Where to go for emotional and mental health advice and support.


Addiction is defined as a high dependence on something, to the point where it could be harmful to you or to others. It could be to a substance – food, alcohol or other recreational drugs – or to a behaviour – such as shopping, gambling or sex.

When the need for the substance or behaviour starts affecting normal life – perhaps causing someone to become secretive or to arrange their lives around meeting this need – people may be regarded as having an addiction, or to be dependent on the behaviour or substance.

There is no single reason why someone develops a dependency, but some people deal with stress or difficulties by turning to mood-altering substances and behaviours. These might seem to solve their immediate problems, but in fact the problem still exists and the dependency is preventing them from dealing with the problem. In the long run, this can cause more problems, and may lead to someone’s life becoming out of control.

It is possible to have either a physiological addiction to or a psychological dependence on something, or for both to exist together.

It is generally agreed that, for someone to address an addiction successfully, they need to recognise the problem and want to stop. There are a number of treatments that work well for addiction – generally psychological therapies. However, sometimes these will need to be combined with medication, especially if an addictive substance has changed the body’s physiology, such as opiates. (See Where to go for emotional and mental health advice and support for more information on how to find help.)

Try to cut back on your drug and alcohol use slowly and gradually. Monitoring how much you use will help you judge how you are doing on reducing or giving up these substances. You may need medical help to stop using alcohol or some drugs (such as GBL, or gamma-butyrolactone) safely. If you use these daily and would like to stop, talk to your healthcare team about how to go about this. (It can be dangerous in some situations to stop drinking or using the drug altogether without medical supervision.) Your HIV clinic staff can give advice or help; they won’t judge you.

Post-traumatic stress disorder

Acute stress disorder (ASD) or post-traumatic stress disorder (PTSD) can sometimes be experienced by people with HIV. These types of anxiety disorders occur when a person has experienced a traumatic event – something outside normal life experiences – and is unable to process the shock properly. This can cause flashbacks, nightmares, a powerful sense of dread, nervousness and an avoidance of reminders of the event. Memories of the event can also be affected and people often say they have difficulty concentrating as they are easily distracted by worries.

There are a number of treatments available for this condition, including psychological therapies. These can be a very successful way of managing the condition (see Where to go for emotional and mental health advice and support for contacts).

It is important to remember that many, if not most, people who experience some kind of traumatic event manage to get through the difficulties associated with it. That is, they manage to adjust to the event and get on with life. However, it is generally recognised that the symptoms associated with PTSD can become a significant problem and can start to interfere with daily life if they continue.


Before effective HIV treatment (often called highly active antiretroviral therapy, or HAART) became available, it was calculated that approximately 2 to 7% of people with very weak immune systems due to advanced HIV infection would develop dementia. Survival rates were, and remain, very poor for people with HIV who develop HIV-related dementia.

Even before potent HIV therapy became available in the late 1990s, the number of new cases of dementia seen in people living with HIV was already falling.

Any potent HIV therapy combination that keeps your CD4 cell count above 200 will protect you from developing dementia or milder damage to concentration, memory and decision-making abilities. People with CD4 counts under 50 are at most risk of HIV-related dementia, although not everyone with such a low CD4 count will develop it.

Thanks to the success of HIV treatment, new cases of dementia are now very rarely seen, and these are only in people who have not been taking potent anti-HIV drugs. The latest UK treatment guidelines recommend that people start HIV treatment, whatever their CD4 cell count, if they have shown signs of neurocognitive (brain) problems. There can be significant improvement in symptoms after people start on HIV treatment.

The symptoms of dementia in people with HIV resemble those seen in older people with senile dementia and include:

  • Difficulties in thinking or understanding, including forgetfulness, loss of memory, severe problems concentrating, confusion and problems planning and organising.
  • Behavioural changes including withdrawing from other people, agitation, a loss of interest, and childish behaviour.
  • Problems with movement and co-ordination, such as loss of balance or strength from the limbs.

It is important to remember that there can be many other causes of the symptoms listed above, not only dementia. It may be that you are feeling stressed and that you have too much on your mind. See your HIV doctor to find out what the cause is if you experience any of these symptoms and are troubled by them.

Sometimes the changes can be due to a condition called minor cognitive motor disorder or HIV-associated neurocognitive disorder. The symptoms of these conditions are much more subtle. Severe anxiety or depression can also result in similar memory or physical changes. Try not to panic if you notice these changes, but do let clinic staff know so that you can be referred to a specialist (usually a clinical psychologist) who can assess whether these changes are due to brain changes or mood problems.

Tests can be done to assess any changes in memory, concentration, and the way the brain processes information. These can be as simple as an ability to memorise and recall lists. A sample of cerebrospinal fluid can also be checked to look for cell abnormalities and the presence of HIV in the nervous system. Scans can also help diagnose these sorts of problems. You may be referred to a psychologist or neuropsychologist for these tests.

There has been some concern that older people with HIV – those aged 50 and above – may have an increased risk of mild brain impairment, involving symptoms such as forgetfulness. The evidence is far from conclusive, but untreated depression, fatigue, drug or alcohol abuse, and poor sleep patterns can also result in similar symptoms. In many cases, these subtle brain changes won’t have a noticeable impact on everyday life.

People with severe dementia often require special care. There used to be several dedicated residential facilities providing care for HIV-positive people with dementia, but because the condition is now so rare these have largely closed. If round-the-clock care is needed this is likely to be provided either in a person’s home or a general residential care home. The Mildmay Hospital in London still provides specialist care, including assessment and respite care, for people with HIV-related dementia and related problems. HIV clinics can provide referrals.


Manic episodes – uncontrolled impulses, irrational thinking, unusual behaviour or bursts of energy or rage – are occasionally seen in people with very advanced HIV infection with very weak immune systems (a CD4 cell count below 50). It is thought that they are due to damage to the brain caused by HIV. Thanks to potent HIV treatment, cases are now extremely rare.

HIV, mental health & emotional wellbeing

Published December 2014

Last reviewed December 2014

Next review December 2017

Contact NAM to find out more about the scientific research and information used to produce this booklet.

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.