Your emotional wellbeing

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:

• Changes to your sleep pattern and the quality or quantity of your sleep
• Development of low mood, lethargy and lack of motivation
• Changes in eating habits, appetite or unintentional changes in your weight
• Changes in your interest in day to day life and the activities you normally enjoy
• Increased irritability, restlessness, lack of focus or inability to concentrate
• A sense of dread, feeling anxious or a tendency to think the worst of situations
• Feelings of isolation, being alone or being undesirable to others
• Change in how you feel about your self-worth, self-image and self-care

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.

Your support networks

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:

• HIV clinics often have health advisors, nurses or specialist nurse practitioners who provide emotional wellbeing support. An assessment of your emotional and psychological wellbeing should take place at every clinic visit. If this isn’t happening regularly, please raise this with your clinic team. Your Dr. can refer you for ongoing emotional support, including peer support services where this is felt to be beneficial
• Informal support networks organised by individuals or groups and online communities such as myHIV community forum. can be extremely helpful. Social media may also have a role to play - be this through closed invited groups on Facebook or platforms like Twitter or Instagram. The important thing to consider with informal networks is your privacy and how best to protect your confidentiality
• Peer support can take many different formats, in person, online and group settings to name a few. Increasingly, HIV clinics are providing peer support as part of the wider in-house support services. Where this isn’t available clinic teams can make referrals to community groups and charities
• Counselling can be provided in person, online or in group settings. Specialist counselling services for HIV have been scaled back in recent years, however THT provide FREE online counselling to anyone living with HIV in the UK
• GPs have an important role to play in your emotional wellbeing which we discuss in more detail in the section entitled Your mental health

Your sleep and relaxation time

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:

• When your asleep, most of the body’s systems go into a state of repair and rejuvenation. Sleep helps restore the immune system as well as other vital systems such as the brain, central nervous system, major organs, skeletal, and muscular systems
• Sleep is important to maintain our mood, memory, and cognitive function and it plays a vital role in the function of the hormonal systems. The internal body clock (circadian clock) regulates your sleep pattern and promotes sleep during the night
• Some studies have shown that during a period of sleep deprivation the chemical messengers (cytokines) responsible for immune activation increase whereas the numbers of some immune cells decrease. This can have a negative impact on how well the immune system functions
• When you’re anxious, stressed or experiencing an emotional shock, the hormone which is responsible for the fight, flight or freeze reaction (cortisol) puts the body into a state of high alert. High levels of cortisol can impact on the body clock and interfere with your normal sleep patterns, causing insomnia or inability to sleep well during the night
• Starting treatment can also induce a period of insomnia and sleep disturbance whilst your body adapts to new drugs introduced into the body. The process of adaptation can take several weeks during which time some systems in the body (liver, kidney and immune system) have to work harder, which can make you feel tired or fatigued
• Many of the drugs used to manage HIV list insomnia and sleep disturbance as a common side effect. Sometimes, changing the time you take your medication can help reduce insomnia or sleep disturbance. If you find insomnia or sleep problems are causing you problems, it’s important to discuss this with your clinic team
• Drugs associated with longer-term insomnia and sleep disturbance include:
• Efavirenz (component of Atripla)
• Rilpivirine (component of Eviplera and Odefsey)
• Dolutegravir (component of Triumeq, Juluca and Dovato)

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

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:

• Inability to get to sleep when you go to bed
• Wake up several times during the night and find it difficult to go back to sleep
• Wake up very early and unable to get back to sleep
• Feel lethargic after waking up and don’t feel refreshed
• Feel tired and irritable during the day
• Unable to concentrate during the day because you feel tired

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

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:

• Experience vivid dreams or nightmares
• Wake up several times during the night as a result of dreams or nightmares
• Generalised restlessness, tossing and turning whilst asleep
• Experience restless leg syndrome, where you can’t keep your legs still
• Changes in breathing such as sleep apnoea, causing you to wake several times in the night
• Experience low mood or periods of anxiety

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:

• Try to go to bed at roughly the same time. This will help you develop a good sleep pattern. Of equal importance is waking and getting up at a similar time each day, as oversleeping can also interfere with your regular sleep pattern
• Unwind and relax for an hour or so prior to going to bed. If you have any worries or things that are on your mind, write them down and deal with them at another time. Try to avoid the use of your smartphone, tablet or computer screen an hour or so before going to bed
• Eating late at night activates your digestive system thereby preventing the body entering a restful state. Whilst alcohol can help some people unwind, it activates the liver and increases heart rate which can result in delayed or disturbed sleep
• Cutting down on caffeine use during the day can sometimes help improve your sleep. Caffeine and other stimulants such as nicotine are also best avoided a few hours prior to going to bed
• Make sure your bedroom is a place where you feel relaxed and calm. Adjust the lighting and temperature to help you unwind. Having some soothing background music can be very helpful
• If you wake up during the night and cannot get back to sleep, get up and do something which you find relaxing until you feel sleepy again

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

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:

• Take time out of your busy schedule - this can be as little as 5 minutes, depending on where you might be and the time you have available
• Practice makes perfect! Allow yourself to relax, be in the moment and focus on your breathing or maybe heart rate. It can be difficult at first to maintain your focus, but with practice this can help you develop your mindfulness technique
• Try to make mindfulness a regular activity which fits with your daily routine. This can be planned relaxation time, or more ad-hoc, involving day to day activities or tasks (eating, drinking, showering as examples)
• Allow yourself time to notice everyday things, and how they connect to your bodily sensations. Feel the warmth of the sun, the chill of the wind, or the sensation that rain has on the skin or the sound it makes
• Where thoughts and emotions pop up in your mind, acknowledge these and then re-focus on your breathing or a particular bodily sensation
• As you develop your technique, try something different, which can be as simple as sitting in a different seat or a different position or at a different time of day or location
• Recognise when you’re anxious, stressed or unable to concentrate, and be aware of how these feelings impact on you. Refocus on the here and now whilst acknowledging these thoughts and feelings, don’t hold onto them

Meditation

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.

Complementary therapies

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

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

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

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).

Osteopathy

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

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.

Your mental health

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

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.

Anxiety

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.

Health anxiety

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.

GP practices

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?

• Your GP can carry out an assessment of your symptoms, taking into account other physical health conditions and recent changes in circumstance. Sharing information that you’re living with HIV with your GP can help ensure you get the best care plan
• GP’s will often use a cascade approach when diagnosing and treating conditions such as depression, anxiety, sleep disorders, with referrals being made to community mental health services for complex and serious conditions
• If your symptoms appear mild or moderate, your GP may suggest changes to lifestyle, which can be beneficial. Increasing your activity levels, improving your sleep, reducing use of alcohol and recreational drugs can often lead to improvements in how you feel
• You should continue to see your GP at regular intervals to review your progress and importantly assess any risk of developing thoughts of self-harm, suicidal ideation and planning
• If there is no improvement in your symptoms you may be asked to complete a self-administered questionnaire which forms part of a more detailed assessment of your emotional and mental ill-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.

• If your symptoms are having an impact on your day to day activities your GP may wish to refer you for a specific form of talking therapy or counselling. This can include CBT, drug and alcohol or more generalised counselling services
• Local IAPT services offer a variety of self-help workshops, including the management of long-term health conditions, improving your sleep through to mindfulness and an introduction to CBT. Back on Track IAPT workshops are generic in their nature and therefore not HIV specific
• Group workshops can be very beneficial, as sharing personal experience of living with a mental condition can have a very positive therapeutic effect, as can one to one peer support
• Increasingly some GP services provide Community Psychiatric Nurses (CPNs) as part of the staff team, who monitor your progress and provide additional support. They can also consider making referrals into secondary mental health services where this is thought to be beneficial
• Organisations such as MIND provide local services that may include one to one or group counselling, peer mentoring, peer support and befriending services. You can often self-refer but it’s always best to check local arrangements

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.

• Psychotropic medication may be considered to help alleviate your symptoms and should ideally be used alongside talking therapy interventions. This will depend on your individual circumstances and assessment of the risk of self-harm
• Where medication is recommended, it’s important to note that your symptoms may become more intense before they improve. This may include increasing thoughts of self-harm, suicidal ideation or suicide
• It’s also important to ensure there are no drug interactions with your HIV medications. You can self-check interactions by using the HIV drug interaction checker. Any new medications prescribed by your GP should be discussed with your clinic team or pharmacist during your routine clinic appointments
• After commencing psychotropic treatment it’s important you continue to take your medication as prescribed and report any deterioration to your GP or attend your local accident and emergency department in the event of an emotional crisis
• It may take several weeks for you to notice any change in mood or improvement in symptoms, particularly in the case of antidepressants and mood stabilisers. You should continue to take your medication even where you start to feel better
• Your GP should continue to monitor your progress carefully and where appropriate make referrals to secondary community mental health outpatient services, particularly where there has been little or no response to either talking or drug therapies

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.

Your community mental health service (CMHT)

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

• Psychiatrists are medically trained doctors who have specialist knowledge and experience in the management of mental ill-health. They will often complete your initial assessment and continue to provide regular ongoing reviews
• Unlike other mental health professionals (psychologists, counsellors) psychiatrists are able to prescribe medications and provide referrals to other forms of treatment, such as appropriate talking therapies
• If you’re already taking psychotropic medication your psychiatrist will review your current medications and may consider making changes. When having a treatment review it’s important to share information about the medications you’re taking for HIV, together with any other prescription and non-prescription drugs
• Follow-up appointments usually occur at 3 monthly intervals, or more frequently depending on your diagnosis. Your psychiatrist will review your symptoms, medications, assess your progress and consider changes to your treatment plan
• Psychiatrists may specialise in particular areas of interest and also provide psychological support for people living with long-term, painful or terminal health conditions

The role of your psychologist

• Psychologists are individuals with academic and research training who work with individuals who have behavioural and emotional difficulties or experience psychological distress which disrupts their day to day functioning and well-being
• Psychologists often specialise in a particular area, such as clinical, counselling, health and forensic psychology. In most cases they aren’t medically trained and therefore are unable to review and prescribe medications
• Psychologists usually work as part of the wider multi-disciplinary team, providing a range of therapies to help with conditions such as depression, anxiety, personality disorder, pain management and a variety of other mental ill-health conditions
• Developing a good relationship with your psychologist is vital as this often forms an intrinsic part of the therapeutic process. As part of your initial psychology assessment your psychologist will try to identify which therapeutic approach is best suited to your circumstances. In most cases you’ll see a different psychologist to the one who completed your assessment
• Talking therapies which are either led by a clinical or counselling psychologist are usually time limited depending on the type of therapy and individual circumstances. Other forms of psychological therapies include art, drama and music therapy
• It may be necessary to undertake more than one type of therapy which are sequenced to provide the best outcomes. It is usual to have a 3 to 6-month period between different interventions where further therapy is required

The role of the duty or crisis team

• Most CMHT services have a duty team of mental health professionals who are able to respond to difficulties that arise whilst under their care
• Duty teams are based in the local mental health outpatient service and are usually only available during the opening hours of that service. You may see a nurse or psychiatrist or both depending on the severity of your symptoms
• It can be beneficial to phone ahead of attending in person, so the duty team get a better understanding of your difficulties and can arrange the right support for you. This will vary depending on local service arrangements
• Crisis teams provide support in the event of a severe emotional crisis and usually visit you at home to assess your symptoms and arrange the most suitable way of supporting you
• A crisis team may be contacted where someone is very concerned about your well-being as part of a safeguarding concern. The person concerned for your safety will attempt to let you know they have asked the crisis team to intervene, but this may not always be possible

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:

• Refer to the crisis plan you may have agreed with your community mental health team
• Call the out of hours crisis service provided by your CMHT
• Attend your local accident and emergency service.
• In the UK call the Samaritans on 116 123

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.