HIV, mental health & emotional wellbeing

Key points

  • Being diagnosed with a serious illness like HIV can have a big emotional impact.
  • People with HIV have higher rates of mental health problems than people in the general population.
  • There’s a lot you can do to look after your emotional wellbeing.

Emotional wellbeing and mental health are important for everyone. Going through difficult times is part of life, but from time to time these can be especially hard to deal with. Furthermore, some people also experience mental health problems, such as depression or anxiety – where emotions such as being in a low mood, feeling helpless or hopeless about the future, experiencing grief – carry on for some time, or return again and again, and start to interfere with quality of life.

Being diagnosed and living with a serious illness like HIV is likely to have a big emotional impact, and people with HIV, as a group, have higher rates of mental health problems than those seen in the general population.

One reason for this may be HIV-related stigma, in other words the prejudices and negative attitudes that some people have about HIV. Stigma is one of the reasons that some people end up having quite negative feelings about themselves in relation to their HIV diagnosis. It can be difficult for anybody, including people living with HIV, to avoid being exposed to the negative and inaccurate ideas and beliefs that have developed about HIV.

Also, some of the groups most affected by HIV in the UK (such as gay men, migrants and drug users) are more likely to have mental health problems, because of the stresses associated with being marginalised from mainstream society. Women are more likely to experience mental health difficulties than men.

Some anti-HIV drugs can affect your emotional and mental health. If you have had mental health problems in the past, it is helpful to tell your HIV doctor this when you start discussing treatment options. That way, the most appropriate anti-HIV drugs for you can be prescribed.

Adjusting to life with HIV

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, uncertainty, 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.

It can be easy to assume the worst about life with HIV. It’s possible that, before your diagnosis, no one told you that HIV treatment is now so effective that most people with HIV can expect to live as long as people who don’t have HIV. Or that the medications also prevent the sexual transmission of HIV – if you take anti-HIV drugs and have an ‘undetectable viral load’, you won’t pass HIV on to your sexual partners.

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, talking about having HIV 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.

Glossary

diagnosis

The determination that a patient has a particular disease or condition, through evaluation of their medical history, clinical symptoms and/or laboratory test results.

anxiety

A feeling of unease, such as worry or fear, which can be mild or severe.

stigma

Social attitudes that suggest that having a particular illness or being in a particular situation is something to be ashamed of. Stigma can be questioned and challenged.

undetectable viral load

A level of viral load that is too low to be picked up by the particular viral load test being used or below an agreed threshold (such as 50 copies/ml or 200 copies/ml). An undetectable viral load is the first goal of antiretroviral therapy.

drug interaction

When a person is taking more than one drug, and drug A interferes with the functioning of drug B. Blood levels of the drug may be lowered or raised, potentially interfering with effectiveness or making side-effects worse. Also known as a drug-drug interaction.

Remember that it's perfectly normal and acceptable to have feelings that you find difficult. Although it can be easier said than done, don't feel bad about not feeling OK. 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.

Looking 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.

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 a widely reported psychological disorder, both in the general population and among people living with HIV. Difficulty going to sleep or staying asleep can be the result of worry, stress or mental health problems, or the cause of them.

"Finding ways of interacting with other people in ways that you are comfortable with is important to good emotional wellbeing."

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 can get support online if you prefer. 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: do-it.org.

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.

Many people find practising mindfulness helps them with their day-to-day wellbeing. It is a technique you can learn that involves paying attention to the present moment, to your thoughts and feelings and the world around us, in the here and now.

Others 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. Religious or cultural communities can be key networks of support and social interaction.

And some people also find that complementary therapies, such as acupuncture or massage, can relieve some of the symptoms of emotional distress.

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