Looking after your emotional health and wellbeing is an important aspect of living well with HIV. Most people can benefit from taking time out to relax and be kind to themselves!
Sadly, HIV continues to be a highly stigmatised condition, which can place a great deal of strain on your emotional wellbeing from time to time. It’s helpful to ‘self-check’ your emotional wellbeing from time to time and review think about how you feel about the different aspects of living with HIV and identify any changes you’ve noticed.
The Positive Voices survey conducted during 2017 identified that people living with HIV are more likely to experience low mood, depression, anxiety and sleep disturbance than the general population. Reactive symptoms can develop after a recent diagnosis, or other life event that isn’t directly HIV related. Longer term emotional difficulties can also develop, which are sometimes related to underlying undiagnosed mental ill-health condition.
You may not experience a significant change in your emotional wellbeing, many people cope very well with their journey living with HIV. Some people may find things difficult upon initial diagnosis and may require a short period of additional help and support at this time. It can be helpful to self-check your emotional wellbeing from time to time and review how you feel about the different aspects of living with HIV.
Some of the more obvious signs that your emotional health and wellbeing has changed or deteriorated can include any of the following:
The important message here is not to ignore how you feel about any aspect of living with HIV and seek support that works best for you. People living with long-term conditions like HIV tend to better self-manage when they have good levels of support around them. This in turn improves their overall health and quality of life.
Reaching out to friends and family in the early days post diagnosis is a natural thing to do for any health condition. Where possible we encourage everyone to confide in at least one person they feel they can trust with such sensitive information, regardless of when they received their HIV diagnosis. We also recognise that this isn’t always possible for a variety of reasons and this is where developing alternative support networks can be so important, regardless of how long we’ve been living with HIV.
Sources of emotional help and support include:
Modern life can be very hectic at the best of times and we should never underestimate the importance of getting enough good quality sleep and relaxation time. Sleep and relaxation are a vital part of remaining physically and emotionally fit and healthy, which can be more important for people living with a long-term health condition like HIV.
What is the link between sleep, the immune system and HIV?
Sleep is an important part of the regeneration and normal functioning of the immune system. Lack of sleep over time can result in the suppression and dysregulation of the immune function. Getting enough good quality sleep is as important as regular exercise, changes to diet and other lifestyle changes for the following reasons:
We all experience individual reactions to our medications and not everyone will experience sleep problems. Taking steps to improve sleep quality and quantity can be an important part of offsetting any impact your treatment on the quality and quantity of your sleep.
Insomnia is often characterised by the inability to get to sleep and remain asleep. You may have insomnia if you regularly experience any of the following:
Some people experience some or all of these symptoms for months or years, which them become the norm. You may not realise the impact insomnia may be having on your physical and emotional wellbeing. Being more aware of your quality and quantity of sleep can be an important factor to improve your overall quality of life.
Sleep disturbance is often characterised by a feeling of not being refreshed upon waking up or always feeling tired during waking hours. Your sleep may be disturbed if you regularly experience any of the following:
improve your sleep
Creating the right conditions to improve your sleep is often referred to as sleep hygiene, which may include some of the following:
Relaxation and your emotional wellbeing
Taking time out of your busy schedule can be difficult to achieve for most of us, particularly in the era of social media and the 24/7 availability of online news and content. Relaxation is very individual in nature, for some it involves physical activity, spending time with friends or family or taking time out to focus on hobbies. For others, relaxation in a quiet, calm environment where external distractions and stimuli are minimised is important. Whatever your preferred way to relax and unwind, taking time out on a daily or regular basis can really help your emotional and physical wellbeing.
Mindfulness is a self-help technique which can improve awareness of self, your surroundings and focus on the ‘here and now’, whilst acknowledging and accepting your thoughts, feelings and emotions. An important aspect of mindfulness is to connect with your bodily sensations, such as breathing, heart rate and muscular tensions as examples.
Mindfulness can also take the form of simply focusing on the food or drink you’re enjoying. Being mindful of taste, smell, temperature and the bodily sensations experienced can be a great way of being more mindful. With practice, this can be built into everyday activities which form part of your daily routine.
Here are some ideas to help with being more mindful:
Meditation has been practiced for thousands of years and is a simple process of connecting with the silence and peace within yourself. When you meditate your attention flows inward rather than engaging with the outside world of activity. Meditation enables you to connect with a deeper level of yourself, the stillness within, and gradually over time you begin to live from a place of steadiness and inner peace.
Meditation may involve many techniques or practices which can help you put logical thought processes to one side and to allow you to just focus on an idea, object, or activity.
Meditation can help reduce stress, anxiety, depression, and pain. It can also help develop an increasing sense of inner peace, improvement to your self-perception and the beliefs you hold about yourself. Mediation may have far reaching benefits to your overall wellbeing, with some studies demonstrating a reduction in immune mediated inflammatory response, reduced blood pressure, reduced levels of stress and an improvement in attention, compassion and resilience.
Learning to meditate, like any other skill, requires consistent practice. It helps if you’re able join a local mediation group or use the many online resources that are available to develop basic meditation techniques.
Yoga and Pilates
Yoga and Pilates, whilst using different methods, both help develop strength, flexibility, posture and improved breathing, all of which can aid relaxation and a sense of well-being. They both emphasise and help develop the connection between physical and mental health.
Yoga in particular, places a great deal of emphasis on developing different postures, which is facilitated by using relaxation techniques to improve flexibility. Yoga also includes some meditation techniques to help with breathing and to develop the connection between the body and mind.
There is some evidence that regular yoga practice can help reduce blood pressure, heart disease, improve general aches and pains, including lower back pain. Yoga can also help reduce stress levels and help better manage depression.
Pilates focuses on strength development in a way to ensure opposing muscle groups are in balance with each other. There is an emphasis on improving core strength which supports the body and improves posture. Regular practice of Pilates can help reduce muscle tension and alleviate joint and muscular pain.
As with other forms of exercise Yoga and Pilates need to be taught to ensure effective technique is developed to avoid injury. It’s important to adapt each method to take into account individual skill levels and any existing health conditions or injuries.
Complimentary therapies such as full body massage, acupuncture, reflexology, osteopathy, and hypnotherapy have long been used to help improve the physical and emotional wellbeing of people living with HIV. These therapies can be used alongside medical treatments prescribed by your doctor or other medical professional.
Some studies have identified a link with massage therapy and an increased immune function related to increased CD4 cell count. Reflexology, hypnotherapy and reiki can help bring about changes in your emotional wellbeing, behavioural change and reduce muscle tension and improve your ability to relax.
It’s important that your therapist or practitioner has up to date relevant qualifications and takes a full client health history prior to undertaking any therapy sessions.
Massage therapy can either be quite specific (sports massage) or more generalised, where soft tissue (muscles, connective tissue, ligaments) are gently manipulated to relieve muscle and joint tension. Massage can also aid body functions such a lymph drainage, blood flow, assist with waste elimination, and the regeneration of immune cells and red blood cells, which carry oxygen around the body.
Acupuncture is a treatment derived from ancient Chinese medicine where fine needles are inserted at certain sites in the body for therapeutic or preventative purposes. Acupuncture can be used in many situations and has been found to be particularly helpful in the management of pain such as neuropathy, joint or muscular plain. Acupuncture can also help reduce stress and feelings of anxiety.
The needles used for acupuncture should be single-use, pre-sterilised which are disposed of immediately after use. There is no risk of HIV transmission as a result of the fine needles puncturing the skin where bleeding may sometimes occur. Trained therapists should ensure universal hygiene precautions and practices are in place.
Reflexology is a form of massage that focuses on the ‘reflex points’ found in the feet, hands, ears and head. One of the main benefits of reflexology is the stimulation of nerve endings in the feet which can improve the nerve pathways and improve muscle relaxation, flexibility, and the sense of self movement and body position (proprioception).
The overarching principle of the practice of osteopathy is that the wellbeing of an individual is dependent on the bone structures, muscles, ligaments and connective tissue all functioning smoothly together. Osteopaths use physical manipulation, stretching and massage with the aim of improving the range of movement within a joint, therefore reducing muscle and ligament tensions which can prevent the joint moving correctly.
Hypnotherapy is a form of talking therapy which involves hypnosis, which is an altered state of consciousness. During your sessions you’ll still be in control of the process and don’t necessarily have to take on the suggestions made by your therapist. Hypnosis focuses your imagination and subconscious to help bring about positive changes to your thoughts, feelings or behaviours.
There are different methods by which your therapist can hypnotise you and it’s important that you have a discussion with your therapist about what you wish to achieve and agree the method they will use. Hypnotherapy should not be used with conditions such as psychosis or certain personality disorders as it can make these conditions worse.
People living with HIV are twice as likely to experience mental ill-health as the general population. Depression and anxiety are the most frequently diagnosed mental ill-health conditions amongst people living with HIV.
Your mental health can deteriorate as a result of an HIV diagnosis, and it’s important to discuss this with your HIV clinic team and your GP. There is a strong correlation between mental ill-health and the acquisition of HIV in some population groups, which can be further complicated by addiction and the problematic use of alcohol and recreational drugs.
Depression is characterised by the feeling of low mood over a long period of time. The severity or intensity can range from a feeling of being low in spirits, to a more severe form that limits your interest and ability to complete the simplest of day to day tasks. For some people, severe depression can become a life-threatening illness with the development of intrusive suicidal thoughts (ideation) and planning.
Being anxious about something is a natural human reaction, sometimes referred to as a ‘flight, fight or freeze’ response to a perceived or actual threat which may cause harm or endanger life. Anxiety can become a serious mental ill-health condition when the feelings of anxiety last for long periods and are particularly intense.
An acute state of overwhelming anxiety can lead to panic attacks which prevent you doing and enjoying things you used to. There are different forms of anxiety disorder, some more severe than others. In the context of HIV health anxiety and ‘hyper-vigilance’ can sometimes become quite severe.
Some people find themselves constantly worried about their health and may be hypervigilant to health problems or the symptoms they experience. For the majority of individuals who are taking treatment and have undetectable viral load, HIV is unlikely to be the cause of most health problems they experience. That said, it can be difficult not to worry, particularly for people who have recently received their HIV diagnosis.
Health anxiety can be particularly troublesome for individuals who are diagnosed with HIV as a result of a physical illness or are told they have been diagnosed late. Terms such as immuno-compromised, late diagnosis, advanced HIV infection or AIDS can provoke powerful feelings of fear and anxiety.
Other more complex mental ill-health conditions can include Post-Traumatic Stress Disorder (PTSD), personality disorders, psychosis, schizophrenia and bi-polar disorder.
Accessing mental health services
Specific mental health support services for people living with HIV have been significantly reduced over many years. Your GP is usually the first point of contact if you believe your mental health has deteriorated. Some HIV outpatient clinics may have local pathways in place to refer directly into community mental health services. It’s always worth enquiring about with your clinic team.
Your GP is often the first point of contact where you feel your emotional wellbeing has deteriorated and you need help and support. GPs are often best placed to assess the best course of action to help improve your emotional wellbeing and mental ill-health.
It can be helpful to make some notes of how you’ve been feeling over a short period, maybe a week or 2 prior to seeing your GP. This can be particularly helpful if you find your symptoms vary considerably or where you think certain events or triggers may be contributing to change in the way you feel about yourself.
What can my GP do to help improve my emotional and mental health?
How can talking therapy and self-help programmes help?
Talking therapies such as counselling and Cognitive Behavioural Therapy (CBT) can be helpful as a form of second line treatment where you and your GP feel your symptoms haven’t or are unlikely to respond to changes in lifestyle. The self-help program Back on Track, which is part of a national programme called to Increase Access to Psychological Therapies (IAPT) is recommended as a second line treatment option.
Psychotropic drug treatment
Psychotropic drug treatment is a generic medical term for the use of medications which can have a beneficial effect on your mood, perception and help improve disordered behaviours. Your GP may consider prescribing antidepressants, mood stabilisers or other medications that help reduce anxiety and/or aid sleep. The latter are generally prescribed with caution to avoid the development of dependency.
Treatment of mental ill-health conditions should be individualised to your particular circumstances. It’s important to talk through all the options available to you with your GP and agree what may work best for you.
If your mental ill-health doesn’t respond to first or second-line treatment and therapies, it may be appropriate for a referral to be made to your local CMHT to help manage your treatment and care for a period of time. This is particularly the case where there are concerns you may have a more serious mental ill-health condition or experience continuous thoughts of self-harm, or suicidal ideations and planning.
The role of your Psychiatrist
The role of your psychologist
The role of the duty or crisis team
Our online peer support service is NOT designed to support individuals who are experiencing a period of emotional crisis. Where you need URGENT help outside the normal working hours of your local CMHT service, please consider the following to get the most appropriate help or support:
In the majority of cases your local CMHT will provide help and support during a short period of mental ill-health. Once things have improved, and your symptoms are more stable or manageable you can expect to be discharged for continuing care via your GP. Each service will have a different approach to the management of longer-term mental illness.