HIV, mental health & emotional wellbeing

Mareike Günsche |

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.
  • It’s important to know that it's completely normal and understandable to have feelings that you find difficult.  
  • There’s a lot you can do to look after your mental health.

Mental health and emotional wellbeing are important for everyone. Everybody has times in their life that they find hard to deal with and it’s normal to feel sad or stressed sometimes. It’s important to look after yourself when you’re feeling like this.

Some people also experience mental health conditions, such as depression or anxiety. These are health conditions which can make you feel low, worried or hopeless for a long time, and they can affect your everyday life.

How does HIV affect your mental health?

Being diagnosed and living with a serious illness like HIV is likely to have a big emotional impact on you. And some aspects of your life will become more complicated, and possibly stressful, because of HIV.

People with HIV have higher rates of mental health problems than those seen in the general population.

One reason for this may be HIV-related stigma. Stigma is the word used to describe the negative beliefs and attitudes that some people have about HIV. Stigma is one of the reasons that some people with HIV end up feeling bad about themselves because of their diagnosis. It can be difficult for anybody, including people living with HIV, to avoid some of the harmful ideas and beliefs that exist about HIV.

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. Women are also more likely to experience mental health problems compared to men.

There are many reasons for this increased risk, including:

  • being marginalised (ignored) by mainstream society
  • having difficulty accessing the same opportunities and services as other people
  • facing unfair treatment (discrimination)
  • going through traumatic experiences, such as harassment or abuse.

Some anti-HIV medication can affect your emotional and mental health too. Tell your HIV doctor if you have a history of mental health problems when you start discussing treatments. That way, they can prescribe the right anti-HIV medication for you.

Adjusting to life with HIV

Finding out that you have HIV can lead to a wide range of feelings. It’s common to feel fear, uncertainty, worry, guilt, shame, embarrassment, anger and sadness after a diagnosis. You might also be concerned about what other people will think. Some people feel numb, and others feel a sense of relief that they’ve finally found out about their status. There’s no right way to feel.

Matthew Hodson, Susan Cole and Mercy Shibemba talk about things you can do to help look after your mental health.

It can be easy to assume the worst about life with HIV. But it’s important to know 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. Medication can also prevent the sexual transmission of HIV. This means that if you take anti-HIV treatment and have an ‘undetectable viral load’ you won’t pass HIV on to your sexual partners.

The feelings people have about HIV can also change over time. Your first response to finding out that you have HIV is unlikely to be the way you feel forever. Many people find that they come to terms with having HIV over time, even if some aspects of being HIV positive still make them feel anxious or distressed.

It’s important to know that it's completely normal and understandable to have feelings that you find difficult. You shouldn't feel bad about the emotions you’re experiencing. Many people with HIV find that their emotional wellbeing is affected from time to time, no matter how well they have adjusted to their diagnosis.

Noticing and accepting your feelings is an important first step.

Ten tips for looking after your mental health

There are also lots of things you can do to look after your mental health.

  1. Take care of yourself

It’s important to look after yourself as best you can. Try to make sure you’re eating regularly and getting enough sleep. Remember that your difficult feelings and thoughts will pass. Try not to think about yourself negatively and don’t judge yourself harshly.

  1. Stay connected

Feeling isolated can make you feel sad and stressed, or it can make these feelings worse. Try to keep in regular contact with people who are important to you. This could be friends, family, or people from your religious or cultural community. You could also try to connect with new people in ways that you are comfortable with.

Alex Causton-Ronaldson talks about the strategies that helped him cope with HIV and mental health concerns on aidsmapLIVE.

Talking about your experiences and feelings with a loved one, or another person with HIV can be very helpful. Many HIV support organisations offer one-to-one and group peer support. You can also get support online if you prefer.

  1. Get some support

You don’t have to deal with your problems by yourself. Sometimes it’s best to ask for some help. This isn’t a sign of weakness. In fact, it’s a sign of strength that you recognise you need some help. If you’re finding your thoughts and feelings difficult to understand or deal with, psychological therapies can be helpful. Your HIV clinic should be able to help you find a suitable therapist if they don’t offer these services themselves.

  1. Be careful when using alcohol and drugs

For many people, having a drink or occasionally using recreational drugs is an enjoyable part of life. But try not to use alcohol and drugs as a way to cope with difficult feelings. They might offer short-term relief, but in the long term, they are likely to make your feelings harder to deal with.

Heavy drinking and drug-taking might also mean you find it harder to remember to take your anti-HIV medication. If you’re worried about your alcohol or drug use speak to your doctor, as there is support available.

  1. Reduce stress

Try and deal with work, relationship, family, money or housing problems as soon as you notice them. Avoiding them can increase your levels of stress. Some people also find that complementary therapies, such as acupuncture or massage, can help them to feel less stressed.

  1. Eat well

It can be hard to eat well if you’re feeling sad, stressed or worried, but try to make sure you’re eating a healthy, balanced diet. Using ready meals and pre-prepared foods can be helpful if you’re finding it hard to shop and cook. Sitting down and eating a meal, especially with someone else, can help you cope with stress and improve your wellbeing. When you can, try to eat slowly and enjoy your food.

  1. Get some exercise

Regular physical exercise can help you manage stress and help you sleep. It can also help with the symptoms of anxiety and mild depression. You don’t have to join a gym. Find an activity that you enjoy such as walking around a local park, doing some gardening, or riding a bike. Exercising with someone else, or in a group, may make it more enjoyable and help you feel connected to other people.

Dr Tristan Barber talks about HIV and mental health in aidsmapLIVE.
  1. Try to get a good night’s sleep

Having trouble sleeping is a common problem. This can include finding it hard to get to sleep, trouble staying asleep, trouble waking up, and sleeping too much. Sleep problems can affect your mental health, and some mental health problems can cause changes to the way you sleep. Sleep problems can also be a side-effect of some anti-HIV medication.

If you’re having sleep problems, try to go to sleep and wake up at the same time each day. It might be helpful to try and relax before you go to bed. Avoid drinking too much alcohol or caffeine as this can disrupt your sleep. You can also get advice and help with sleep problems by talking to your doctor or HIV clinic.

  1. Do things you enjoy

It’s important to do things you enjoy when you’re going through a difficult time. This could include making time for a hobby you already have or setting yourself a goal to try something new. For example, volunteering with a charity or community group. You may also want to join organisations, based on your interests, to meet new people.

  1. Practise mindfulness

Many people find practising mindfulness helps them with their day-to-day wellbeing. It’s a technique you can learn that involves paying attention to the present moment. It helps you to focus on your thoughts and feelings and the world around you. Some people also find that prayer, meditation or quiet reflection can help reduce stress and loneliness.

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