A diagnosis of multiple sclerosis (MS) can have a huge impact on someone’s mental health and emotional wellbeing. It can present in many different ways and can raise all sorts of thoughts and feelings around your future and how MS will play a part in it.
Dealing with the unpredictability of the condition can be hard and often takes its toll on a person’s emotions. It can take time to adjust to a life with MS. These feelings shouldn’t be dismissed and there is a variety of support available.
There is no right or wrong way of dealing with a diagnosis or the changes that MS can bring. This will depend on a variety of factors such as how the condition is presenting at that time, the individual coping skills and resilience of a person, different personality types, and what support is available from family, friends and health professionals.
What is important is recognising that MS may have an emotional impact to a certain degree and that is perfectly natural.
Emotional reactions can come as an ‘indirect’ response to being diagnosed. Living with a long-term health condition, the changes it can bring to a person’s life and the impact it can have on relationships, work or how a person sees themselves, for example, can spark a range of different emotions.
It can also be a ‘direct’ response given how MS can affect the brain. For example, the frontal lobe of the brain controls your emotions and if there is an MS lesion in that area it will most likely have some direct impact on your emotional responses.
It is estimated that one in four people living in the UK will experience a mental health problem each year (1). On a worldwide scale, a review of studies that focused on the impact of MS on mental health found that over one third of people with MS will develop clinically significant depressive or anxiety-related symptoms over time, with the prevalence of depression increasing significantly during relapses. It was also found that depression and anxiety affected over one third of people who had recently received an MS diagnosis (2).
This booklet relates specifically to the impact that an MS diagnosis and the condition itself can have on your mental health.
It is not just the actual diagnosis of MS that can have an impact on a person’s mental health but living with the condition and the changes that can come with it can affect wellbeing too. As already mentioned, the condition itself can have a negative impact on your emotions, so the effect on your mental health can be both a symptom of, and a reaction to, MS.
MS is a fluctuating condition. There may be changes in symptoms and feelings of anxiety when a relapse occurs. The transition from relapsing remitting MS (RRMS) to secondary progressive MS (SPMS) can feel like a new diagnosis which can cause anxiety alongside varying rates of disease progression. All these things can have an impact, causing low mood, heightened anxiety levels and depression.
There might be anxiety about what the future may hold, in particular the uncertainty of not knowing what the future may be for yourself and your wider support network. Below we explore low mood, depression and anxiety in more detail.
It can sometimes be difficult to know the difference between low mood and depression. Symptoms of low mood can include
If a person notices that their low mood is starting to interfere drastically in their daily life and is lasting longer than a couple of weeks, this may be a sign of depression (3).
Depression can present in a variety of different ways and examples of how a person might think or feel include
When a person is experiencing depression their behaviour may change too. Feeling tired all the time and therefore not doing as much during the day can be an indication of depression.
Other changes and physical body responses can include
There is much debate about what causes depression with research suggesting that there is usually more than one single reason. We are all the sum of our personal life experiences, genetics, health issues and lifestyle, to name just a few of the factors that are cited to have an influence in the onset of depression (4). As individuals, our pathway to being depressed will usually be unique, sometimes very complex, and multifaceted.
The impact of MS as a cause of depression, in part, is the one constant that many people with MS share. That said, a source of confusion can be that some symptoms of depression can also be symptoms of MS, making it difficult to differentiate between the two. For example, fatigue may be an MS symptom, or it may be a symptom of depression. Or it could be both.
Fundamentally, depression can affect anybody, and it is important to note that an MS diagnosis does not mean you will automatically become depressed. However, around half of people living with MS will experience depression symptoms at some point in their lives, meaning it is more prevalent in people with MS than it is in the general public (5).
Interestingly, a recent study has shown evidence of an association between MS lesions appearing on what they term a ‘specific brain circuit’ that is linked to the onset of depression, and depression in people with MS (6).
The hope is that the more we learn about why people with MS are susceptible to low mood and depression, more specific treatments and therapies will become available.
If you think you may be depressed it is important to seek support and not sit in silence. Being affected by depression is nothing to be ashamed of and is often a natural reaction to a diagnosis, a relapse, and other changes that come with living with a long-term health condition. We explore ways of accessing different types of support later in this booklet.
Anxiety is something people can feel when they are worried, fearful, tense or afraid. Uncontrollable, sometimes racing thoughts about things going wrong can be consuming. Anxiety is a natural response when people perceive they are under threat. Most people will feel anxious at times particularly during periods that are stressful, such as the occurrence of major life events. If feelings of anxiety are very strong or last for some time, they can be overwhelming (7).
Anxiety is a term that covers a range of specific conditions, the most common being generalised anxiety disorder (GAD). Anxiety also covers phobias, panic disorders, adjustment disorder and stress reactions (8).
MS can cause anxiety within the brain itself. One reason that MS tends to cause anxiety is because the condition is unpredictable, which causes uncertainty. As we know that no one experiences MS in the same way and lesions can affect any part of the brain, some people may have generalised anxiety, whereas others may have panic disorder, and more.
MS can also cause anxiety as a result of the illness itself. MS inflames various parts of the brain, and when the brain experiences damage and stress, it’s not uncommon for a person to experience anxiety. Depending on where the inflammation occurs, it may also provoke panic attacks.
Symptoms of MS can be triggers for those that already have anxiety. For example, many people with panic disorder have panic attacks as a result of changes in their body’s sensations. MS can cause changes in sensations that trigger panic attacks. While MS isn’t technically causing the panic attacks directly, it’s creating an environment that makes them far more likely (9).
Anxiety can cause the following symptoms
The main difference is that depression refers to a single illness, whereas anxiety refers to a group of conditions.
Anxiety and depression are experienced very differently despite them sharing some similarities. For example, anxiety causes worry about the immediate or long-term future, whereas depression can cause assumptions that the future is hopeless.
The mental and physical characteristics differ between the two and the physical symptoms of both can be very exhausting for the person affected. Both have very different psychological features (10).
Anxiety and depression can also be a reaction to one another. People experiencing depression can often experience symptoms similar to people experiencing anxiety and vice versa. It is also possible for people to have them at the same time. They can have an overlap of symptoms and it is thought that around half of people with generalised anxiety disorder will also have depression (8).
Low levels of serotonin are thought to play a role in both, along with levels of other brain chemicals such as dopamine (10).
While it is important for healthcare professionals to understand these distinctions so they can best support you, the most important thing for you is to know where to turn if you need help.
NHS Inform Scotland’s website hosts some useful self-help guides designed for people experiencing mild to moderate anxiety and depression. These guides offer support that is underpinned by cognitive behavioural therapy (CBT) techniques.
Anxiety
Depression
We are all individuals, with our own unique perspectives on life and ways of dealing with what it throws at us. Fundamentally the way we respond to situations that arise are shaped by our life experiences since birth and the issues affecting us in the present day. As such the way each of us deal with life-changing events will differ. This includes being diagnosed, and living with, long-term medical conditions such as MS.
Being diagnosed with MS may lead to some people starting to see themselves differently, otherwise known as an ‘altered sense of self’. It can be triggered by different things, such as the initial diagnosis to the impact of the condition over time. Others may see MS as being part of them, something that is not alien, a perspective which can foster a sense of ‘normality’ or ‘acceptance’. Often, receiving a confirmed diagnosis can take a long time, and as a result, the period from acknowledging initial symptoms to being diagnosed can take its toll.
Adjusting to a life with MS can take time. For some the process of adjustment and acceptance can take longer than it does for others, and that is perfectly natural.
A study in 2019 suggests that for people with MS, incorporating and accepting the condition as part of their ‘self-identity’ can have positive implications for seeking and receiving support (11).
The study looked at how MS can influence a person’s sense of self. For example, how a decline in body functions and performance can lead to feelings of loss of self and changes to identity. Each can have a negative impact on psychological wellbeing. It was suggested in the study that due to this impact, people with MS may perceive that others view them differently because of their condition. This can lead to both anxiety and depression. It may also lead to social isolation as these thoughts may start to prevent a person from going out and socialising through fear of what others think of them.
Adjusting to life with MS can be difficult and accepting this may lead to feelings such as anger and resentment. Some may find it hard to incorporate this ‘MS identity’ into who they are. This could lead to negative effects and cause a person to not seek support from those around them, which can spark increasing levels of anxiety and depression.
A diagnosis does not automatically bring a person’s sense of self into question, more so it is the level in which symptoms can impact a person’s ability to fulfil roles that were fundamental to their pre-MS self (12). The symptoms that are more likely to contribute to emotional problems are the ones that threaten how a person sees themselves. It is therefore important to talk to healthcare professionals about these symptoms, this includes both the physical and emotional toll which they may be having on you. Your GP, MS nurse and neurologist can help find ways to manage these symptoms which in turn will help to maintain a positive sense of self. Additionally, identifying ways to reconnect with valued interests, roles and activities plays an important part in this process (12).
Studies have discovered there are certain themes experienced by people with MS. These themes include the idea of concealing the condition which can perhaps indicate feelings of denial towards a diagnosis. For some, not telling people about their MS diagnosis offers a sense of holding on to their pre-diagnosed self, perhaps thinking that once they tell people, they will be seen as different to whom they were (11).
Living with a long-term condition can provoke powerful emotions. Feelings of anger, sadness and adjusting to a diagnosis can feel like a grieving process. This is a natural reaction to such a life-changing event (13). Someone may be grieving for the person they were before MS started to have an impact, and also grieving for a life they thought they would have that may now change as a result of diagnosis.
In her book ‘On Death and Dying’ published in 1969, world renowned psychiatrist Elizabeth Kübler-Ross introduced her theory of the five stages of grief, also known as the ‘Kübler-Ross model’. This model was initially devised as a result of her work with people who were affected by advanced illness but can be applied to understanding the concept of grief in many other circumstances.
Kübler-Ross has stressed that these stages of grief may not be experienced by everyone, and this is not a linear process (14). However, it is helpful to be aware of what each stage may entail.
Throughout varying stages of living with MS, some or even all of the above stages may be experienced at some point. Relapses, for example, may trigger this process a number of times. Living with increasing levels of progression can also trigger this process. It is important to note that as MS can fluctuate, so can a person’s thoughts, feelings and emotions.
It is also key to remember that the process of handling grief is natural and unique to each person. Therefore, be kind to yourself, accepting that you may need time and space to heal (13).
Dealing with the unknown that living with a long-term health condition brings can be hard and it is common to feel anger for a number of reasons. Thoughts of ‘why me’ can create feelings of anger, grief and loss. A person may feel angry at what MS has taken from them or the way it has changed their life, or angry because it causes frustration. These are just a few examples. A mixture of emotions may be experienced, and all of those emotions are valid. If these emotions are not acknowledged in some way, they may manifest and merge into frustration and anger.
Most people view anger as a negative emotion and therefore try to push it away. This can result in negative consequences such as distancing from or pushing away the people we care about.
As anger is mostly thought of as a negative emotion, people learn to suppress it. Instead of finding ways to deal with the anger, people may choose to keep busy or withdraw from others in order to ignore it (15).
Anger can arise from feeling powerless or out of control and is commonly seen as a way of hiding upset, shame and vulnerability, all of which are extremely valid responses for people with MS irrespective of what type of MS they have or how long a person has had it for.
In some cases, these strong emotions can be caused by nerve damage, or relapses in parts of the brain that control the emotions. Long-term damage can have a real impact and, in some cases, change personalities (15).
Anyone living with MS has the right to feel angry, but research suggests if not addressed it can result in a reduced quality of life, specifically for people with MS (16). By learning to understand and manage angry thoughts and feelings, better control can be achieved, resulting in a positive impact on both physical and mental health.
There are many ways to deal with anger, these include practicing mindfulness, or talking to a qualified counsellor. Anger is a complex emotion and what can seem like a small niggle can in fact come from a bigger root cause that should be dealt with. There are often many layers of emotions and simply talking about them can help relieve some of the angst and tension felt (15).
Frustration is the experience of being upset or annoyed as a result of being unable to change or achieve something. Living with MS can create many frustrations. These may include things such as how long it took to receive a formal diagnosis, a feeling of not being listened to or heard by health professionals, frustration at dealing with the benefits system, and the list could go on.
Another source of frustration can be the impact the condition has on your quality of life. For example, fatigue can make daily tasks more difficult to perform, can make work commitments more difficult to fulfil and have an impact on taking part in the hobbies that you love to do.
Any kind of frustration can be unpleasant to experience and if prolonged can lead to low mood causing unhappiness, poor sleep, negative thinking, worthlessness and self-pity. If left unchecked for too long, the impact can be debilitating and often have a ripple effect onto others.
One way of helping to overcome feelings of frustration is to try out what are known as distress tolerance skills, a type of dialectical behavioural therapy (DBT) which works using distraction and shifting focus. Distraction can help to divert attention and it works better when the diversion is to something that you can be fully absorbed into, something you may enjoy. Different things work for different people, so it is worth trying some out and seeing what may work for you.
Shifting focus helps by noticing the frustration and then deliberately choosing where to put your focus. Do you choose the frustration or a different focus? As you ‘do’ your chosen activity, you will notice thoughts, feelings and other distractions come into your awareness so just notice them, then gently bring your attention back to your chosen activity (17).
Examples of ways to distract yourself from frustration include things like thinking about what needs doing in your home or garden, and doing some work in bite-sized pieces to manage your energy levels.
Other things to try might include
Pampering yourself
try out aromatherapy or reflexology. You could watch tutorials online on how to massage reflexology points on the hands or feet. You could take a relaxing bath whilst listening to a podcast or a meditation, creating some space in the mind. Or watch a feel-good comedy movie, or a nature documentary.
Get out and about
join a leisure centre or health club or see what is going on at your local Neuro Therapy Centre. Take a walk or a jog, sit by the beach or in a park, take in your surroundings, and notice things around you that you may have not even thought of before. Take a bus ride to somewhere new, visit the library, or a museum. Find out what free classes are on in your area, visit a local garden, or go out for coffee or lunch.
Be creative
learn a new hobby, or a new language, write a story or poem, learn to meditate. Try out a yoga class, Qi Gong or Tai Chi. Try your hand at painting, or knitting, or sewing.
Make contact with others
phone someone you have not spoken to for a while, do some voluntary work, join a group of some kind, write a letter or email to a friend. You could also consider contacting the MS-UK Helpline or join one of our Peer Pods.
Express yourself physically
bang a drum, shout or sing loudly, dance.
Talk to yourself positively
it is so very important to be kind to yourself, encouraging and positive. Tell yourself ‘I can get through this – I can take one hour at a time and these feelings of frustration will pass’ (17).
Guilt can be a part of the grieving process, when a person is searching for answers to their questions of why something is happening to them and also the impact it can have on others. It can be a difficult emotion to identify and is often disguised by feelings of anger or resentment. When it is identified it can leave a person feeling quite low.
People living with MS may experience guilt for a number of reasons. These might include:
Guilt is experienced by most people at some point in their life, however, if you notice you are constantly apologising to yourself or others this could be a sign that you may be experiencing feelings of guilt. Communication is key in challenging these feelings. Talking to someone you trust, such as a family member, friend, colleague or health professional, can help you to start finding ways to alleviate these feelings.
If guilt is not recognised or processed it can impact your mental health and wellbeing. As well as talking to a trusted person, it may also be helpful to speak to an experienced mental health professional to discuss the feelings of guilt in a safe, supportive and non-judgemental setting. This could be through
More information about these types of therapy can be found later in this booklet.
Family members and close friends can also experience all or some of the emotions and feelings we have explored so far. MS can affect the wider family sometimes as much as it can the individual diagnosed. Family members and friends may feel upset and angry that someone so close to them, someone they love and care for, has received an MS diagnosis. They may feel angry, frustrated and helpless as they see the people they love deal with different symptoms, relapses and progression.
Guilt can also be a particularly common feeling held by those close to you. They may feel that they are not caring enough, or that they don’t have enough patience or compassion towards the person living with MS. Another potential issue is the feeling of guilt that it wasn’t them diagnosed instead. Or they may blame the person for the challenges presented which can provoke guilt in the person living with MS (18).
Change is something that every human being will encounter within their lifetime. This may be a change in age, relationship status, education, job, or home, and we all deal with the challenges that change thrusts upon us in many different ways.
For people living with MS, change can have a far greater impact from one day to the next. For example
Emotional, physical and cognitive changes can have an impact on relationships. People may start to withdraw from family and friends. They may choose not to go to social events due to these changes. People might find they receive less invites to social events as a result which may cause lowered mood, anxiety and depression.
If a person finds they need to rely on others more, this can lead to feelings of guilt, shame or frustration which can start to impact relationships.
Other impacts on relationships might be
Emotional, physical or cognitive changes can impact a person’s work life. People may feel hesitant to express what work adaptations and support may be required because they
Our ‘MS and Work’ webpages provide information about a wide range of issues that encompass this topic. These include employment law, finding employment, speaking to your employer, reasonable adjustments and much more.
www.ms-uk.org/ms-and-work
People may notice how emotional, physical or cognitive changes mean they
While some people with MS may be able to accept these changes, others may find it far more difficult. They may feel a sense of guilt, upset, frustration, anxiety, grief, loss or sadness that things have changed and may feel stuck or unsure of how to move forward.
People may find themselves feeling overwhelmed by the emotional, physical or cognitive changes occurring. They may feel that life suddenly feels out of their control. Changes can highlight how different life looks to what it did a decade, a year, a month, a week or even a day ago. It is good to be able to find a way to talk about these changes and how they make you feel. Bottling up these thoughts and feelings can affect a person’s mental health and wellbeing.
Talking to a trusted person about any changes experienced can really help. Counselling can help you process your thoughts and feelings in a supportive, professional and non-judgemental space (19). We provide more information about counselling later in this booklet.
There are a number of ways to support your own mental health, and different techniques to practise at home, maybe alongside professional help or as an ongoing strategy to maintain a healthy mind.
It is important to realise that you need to take care of your mind in the same way as your body. For example, poor diet, smoking, or taking little or no exercise is going to result in poor physical health. The principle is the same for mental health.
Talk to people you trust. It can really help to confide in someone close to you about how you are feeling. Sometimes people don’t feel they want to talk to others through fear of burdening them or that it may just be too difficult to open up, even to good friends, about the challenges of MS.
Some friends may find it hard to listen, as they perhaps want to be able to do something to help. There may not be anything they can do except listen, but for many, a listening ear can provide so much support. Often people will feel flattered that you trust them enough to talk about your feelings. They may even have noticed something and feel relieved that you have spoken to them.
Talking to another person with MS can be helpful as there may be a mutual understanding of living with the condition and how it can impact. Joining a local group or online forum, visiting a local Neuro Therapy Centre, or getting involved with one of the many MS-UK Peer Support Pods can help you connect with the wider MS community.
MS-UK Peer Support service
www.ms-uk.org/peer-support-service
MS-UK Finding support in your community
www.ms-uk.org/finding-support-in-your-community
MS-UK Forums and online support
www.ms-uk.org/online-forums-for-MS
Neuro Therapy Network website
https://ms-uk.org/ms-therapy-centres/www.neurotherapynetwork.org.uk
The following is a list of suggestions of self-help and ways to help care for your mind.
Many therapeutic approaches use breathing techniques to help calm the body and the mind. Breathing techniques produce a bodily response that helps to lower anxiety. Deep breathing, more specifically, slowing the out-breath, helps to decrease blood pressure, dilate your pupils and slow your heart rate. The theory is that by practising a breathing technique a few times per day, stress levels will reduce in the long term. The longer out-breath stimulates the parasympathetic nervous system, therefore a technique with a longer out-breath than in-breath will be more effective (20).
A common technique is ‘7-11’ breathing.
It is important to breathe in deeply, rather than a shallow, upper lung breath. A deep diaphragmatic breath where the diaphragm moves down and pushes your stomach out as you take a breath in is required.
If you find that is too long, you can reduce it and breathe in for three and out for five, in for five and out for seven or whatever is most comfortable, as long as the out-breath is longer than the in-breath. Focusing on breathing is not only relaxing but it is also a good distraction and can help take your mind off any immediate concerns.
Research suggests that how we eat can have an impact on how we feel. By improving your diet it can help to improve mood, give more energy and help you think more clearly.
The mental health charity Mind provide some salient guidance on food and its impact on mental health (21). Below are some tips which they suggest could be areas of focus
Our ‘Diet and Supplements’ Choices booklet provides further reading on the link between our diet and MS, including more information about gut health and the specific diets that have been developed and used by people with MS, with positive results.
www.ms-uk.org/choices-diet-and-supplements-content
The NHS Live Well website offers guidance on a range of topics about healthy living including diet and exercise.
www.nhs.uk/live-well
Studies have shown that moderate exercise can improve mood and general wellbeing, provide stress relief, increase energy and stamina, reduce tiredness and increase mental alertness. It can also help you to feel better about yourself (22).
Exercise helps to release endorphins. These are the body’s own feel-good hormones. MS and some medications can make people less active – this may be due to fatigue, dizziness, poor mobility, or a lack of motivation. Doing short sessions of exercise can make a big difference to mental wellbeing as well as physical health. It helps to start with something small rather than set yourself unrealistic goals. Just ten minutes a week is better than nothing, increasing to ten minutes a day to then 30 minutes a day dependant on your ability can really make a difference.
Exercise doesn’t just mean going to the gym, or going for a run, it could be having a dance around your kitchen, hula hooping in the garden, some gentle seated yoga or Pilates. Finding the right type of exercise is important as you will be more motivated to continue doing something that you enjoy.
Contact your local Neuro Therapy Centre to see what exercise equipment and classes they have available. If you cannot find a therapy centre that is close to you, contact the MS-UK Helpline and they will look to see what alternatives are available in your area.
At MS-UK we host a variety of different forms of accessible online exercise classes that suit different levels of mobility. From our chair yoga and seated exercise classes to information workshops, our online activities are wide-ranging and inclusive.
To find out more about the benefits of exercise in managing the impact of MS please read our dedicated ‘Exercise’ Choices booklet
www.ms-uk.org/choices-exercise-content
MS-UK’s online activities
www.ms-uk.org/ms-uk-online
Gratitude is, quite simply, the human way of acknowledging the good things in life. It is a positive emotional response and is known as a natural stress detox for both the body and mind.
Research suggests that by practising gratitude, you can receive psychological, physical and social benefits. These include encouraging positive thoughts and emotions, enhanced mood, optimum blood pressure and cardiac functioning, better sleep/wake cycles, improved communication, more empathy and stronger interpersonal relationships (23).
Practising gratitude can reduce fear and anxiety. It can form new neural connections within the brain and enhance dopamine and serotonin – neurotransmitters responsible for happiness. When practised daily it can produce a feeling of long-lasting happiness and contentment (23).
Some ways to practise gratitude include
Research shows that by recognising the good things that are happening, it helps to strengthen the ability of the brain to focus on positive things. In his various studies that focus on the effects of gratitude, Dr Robert A Emmons PHD, psychologist and professor at the University of California, found that gratitude has a positive relationship with neurodegeneration and cardiac health, enhances mood, helps promote a healthy sleep-wake cycle and can help individuals manage anxiety and depression (23).
This technique is a coping strategy that can help to reduce anxiety and shift attention away from frustrations, bringing the mind to the present moment by focusing the senses and saying/thinking to yourself. Grounding techniques can help separate you from the distress of your emotional state or situation, allowing your body to calm itself and recognise that the perceived threat is no longer present. In effect they are designed to help you better manage the sympathetic nervous system’s ‘fight or flight’ responses (24).
Grounding uses different techniques that help with managing the impact of stress and trauma. There is no one size fits all approach and so what works for one person may not work for the other. It is about trying different approaches and finding what works for you.
Below are just three examples of grounding techniques (25)
The ‘5-4-3-2-1’ method – This requires you to list senses that you feel at present, working backward from 5, counting down to 1, for example
Focus technique – Choose a small item, could be anything that fits into a pocket, from a stone, coin, gem, or a piece of jewellery. Place it in your hand and close your eyes. Concentrate on different aspects of the item, such as
Next open your eyes, look at the item, focusing on detail such as
Using this process and the same object at times of increased anxiety can help you to focus on managing its impact.
Adrenaline refocus – Sometimes it can be difficult to connect with the more relaxing techniques such as the ones mentioned above. At such times, channelling the adrenaline that is pumping around your body into activities that will help to ‘burn off’ the energy that it brings, can then help you to refocus on other techniques afterwards. How you do this is entirely up to you, but some examples are
Practicing grounding techniques can help you take your focus away from sources of anxiety and in turn be an effective coping strategy.
Mindfulness is a brain training meditation practice that originated in Buddhism 2,000 years ago. Mindfulness exercises are ways of paying attention to the present moment, using techniques like meditation, breathing, and yoga. Research has shown that it is effective at reducing stress and anxiety, increasing focus, reducing fatigue and pain, and it can help to boost the immune system and also increase a sense of acceptance (26).
Training helps people to become more aware of their thoughts, feelings, and body sensations so that instead of being overwhelmed by them, they’re better able to manage them. Practising mindfulness can give more insight into emotions, boost attention and concentration, and improve relationships.
Prioritising relaxation as an essential part of health is a good first step to mindfulness. Setting time aside to practise daily will help to enable the brain to physically rewire itself and allow the mind and body to be able to slip into states of relaxation more easily (26).
Mindfulness is also recommended by NICE as a preventative practice for people who experience recurrent depression (27).
You can speak to your GP or MS nurse to find out about any mindfulness courses in your area or call the MS-UK Helpline who will help you to find suitable options.
MS-UK also host four and eight week-long mindfulness courses which are available are part of our online activities programme.
MS-UK online activities
Both religion and spirituality can have a positive impact on mental health and for some can provide a sense of peace, purpose and forgiveness.
Religion and spirituality can offer you something to believe in, providing structure and connection with others over similar beliefs – a sense of community with likeminded individuals. If presented in a supportive way, both can help to improve mental health (28).
Mobile phone or tablet apps can be really useful in supporting a healthy mind (29). They can be used alongside therapy, or in isolation and are seen as a step in the right direction of finding ways to support your mental health.
Here are some suggestions that are all available as an app on android and iOS –
The mental health charity MIND provides a varied summary of online mental health tools, incorporating social media, blogs and podcasts
www.mind.org.uk/information-support/tips-for-everyday-living/online-mental-health/online-mental-health-tools
There are a number of health professionals who can help to support you if you are experiencing mental health issues. Here we explore some options
Talking to your GP is a very good starting point. It can be difficult to start the conversation but try to be honest and open. Discussions around having trouble sleeping, feeling anxious, having little interest in hobbies or life in general will allow your GP to ask more questions and, where appropriate, refer on to more specialist mental health support perhaps through a social prescription service.
Try to focus on how you feel and use words that feel natural to you, not ones that you think the GP will want to hear. In some cases, it may be helpful to start medication first before seeking additional support.
Talking to your GP or practice nurse at an early stage can help you to stay well.
MS nurses will be aware of the challenges people with MS face on a daily basis. They may even spot signs of low mood or depression before you do as they recognise the symptoms and behaviours. Talk to your MS nurse about any current difficulties, they too may be able to help you seek appropriate support.
Seeing a counsellor or therapist can give you a safe environment to talk about important issues in a confidential and non-judgemental way. This may help you to reflect on issues of concern and it can support you to develop coping strategies for the future.
Counselling is a talking therapy and can help you to be open and honest about how you feel and how MS affects you. Counsellors do not offer advice or tell you what to do but help you to talk about your experiences to make it easier in finding a way forward.
There are various bodies that counsellors are likely to be registered with such as the British Association for Counselling and Psychotherapy (BACP), the UK Council for Psychotherapy (UKCP) or Counselling & Psychotherapy in Scotland (COSCA). Counsellors will usually be transparent and open about the body they are registered with.
Talk to your GP or MS nurse as there may be forms of talking therapies available from your local public health authority. Some of these services are accessible via self-referral.
There are also localised charities that provide access to free or low-cost counselling, however, the presence of these charities does vary from area to area.
You can also access counselling via other sources, such as your local Neuro Therapy Centre. Also, the MS Society in the UK has locally affiliated groups, some of which provide access to counselling.
MS-UK hold a directory of fully qualified, registered counsellors who have all undertaken our ‘MS Awareness’ and ‘Counselling people with multiple sclerosis’ eLearning course. These counsellors offer telephone or online counselling and some also provide access to face-to-face sessions depending on where you live. Each counsellor has stated their experience and costs within the directory, which is available on the MS-UK website, visit ms-uk.org/ms-counselling-directory/.
BACP
www.bacp.co.uk/search/Therapists
UKCP
www.psychotherapy.org.uk
COSCA
www.cosca.org.uk
MS Society local group search
www.mssociety.org.uk/care-and-support/local-support
Life coaches help you to identify and unlock your individual strengths, developing ways to use them in a positive sense to achieve set goals, overcome obstacles and generally live a healthier and more positive lifestyle.
Fundamentally, life coaches can specialise in helping you to develop strategies in many different areas of life, from careers, relationship building and general personal development. There are MS-focused life coaches based in the UK and beyond whose aim is to empower people affected by MS to live healthier and happier lives.
Life coaching is currently not a regulated entity, and each coach will usually have their own approach and techniques, underpinned by their life and professional experience. Many coaches offer an initial consultation, usually at no cost, that will help you to gauge whether their approach, in terms of the tools they use, techniques and their personality, would be the right one for you (30). Additionally, most life coaches will have their own websites that provide information about their backgrounds and methods they use.
CBT is a talking therapy which focuses on how your thoughts, beliefs and attitudes can affect your feelings and behaviours. It teaches coping skills to help you deal with different problems (31). CBT combines cognitive therapy, which entails examining the things you think, and behaviour therapy, which examines the things you do, and is one of the more common types of therapy for anxiety and depression.
CBT is based on the idea that the way we think about situations affects the way we feel and behave. For example, if you react negatively to a situation, it is likely you will experience negative emotions as a result. Those feelings may lead you to behave in a certain way. Negative thinking patterns can start from childhood and if they go unchallenged can become part of a continuous cycle.
Fundamentally, CBT can help you to challenge negative thinking patterns, with an aim to change the way you feel about situations, enabling you to change your behaviour in the future. It can also help you find ways to cope with physical health problems, such as fatigue and pain (31). The tools and techniques learnt from CBT can often be applied to help you manage other problems in the future.
CBT is recommended by NICE as a tool to manage depression and anxiety (27).
Referrals for CBT therapy via the NHS can be made by your GP, self-referral is available in some areas of the UK, or you can look for a private counsellor who offers this particular type of therapy through the BACP, UKCP or COSCA websites, to which we signposted to earlier in this booklet. Self-help books or online courses can also be accessed and may be useful whilst you are waiting.
The NHS every mind matters website offers guides to self-help CBT techniques
www.nhs.uk/every-mind-matters/mental-wellbeing-tips/self-help-cbt-techniques
Living Life Scotland – A service powered by NHS 24 that offers telephone-based CBT courses. Available for people living in Scotland only
www.breathingspace.scot/living-life
Silvercloud Wales – Powered by NHS Wales, this is an online therapy platform that uses CBT techniques to help people manage mild to moderate anxiety, depression and stress. Available to people living in Wales only
www.bcuhb.nhs.wales/health-advice/mental-health-hub/silvercloud-free-online-mental-health-therapy
ACT aims to help people to explain their negative thoughts and feelings, enabling better self-management. It works towards living an active, valued life and increasing acceptance. Studies have shown that ACT reduces psychological distress and can help improve quality of life for people with MS (32, 33).
ACT encourages people to embrace their thoughts and feelings rather than fight against them or feel guilty for them.
There are six key elements to ACT which provide a framework for developing psychological flexibility (34). These are
ACT emphasises acceptance instead of avoidance.
Jo Johnson, Consultant Neuropsychologist, says that research is showing this is a helpful model of therapy for people with MS and for their partners. Also, that it may be more suitable for people with mild cognitive problems, significant fatigue or for those going through a relapse, as it is an easier model to understand (35).
ACT MySelf – This is a self-help support tool, underpinned by ACT principles, that is designed to help people living with MS to build an action plan aimed at improving their emotional wellbeing
www.actmyself.co.uk
NHS Talking Therapies formerly known as Improving Access to Psychological Therapies (IAPT) offers access to a range of evidence-based psychological therapies designed for the treatment of adult anxiety disorders and depression in England. Since its inception in 2008 this service has helped people to overcome their depression and anxiety, supporting them to manage their mental health more effectively.
NHS Talking Therapies can be accessed by self-referral, as well as via your health professionals. You can find out what services are available in your area by using the search facility on the NHS website.
Access to talking therapies is available in other areas of the UK, with referrals usually made via your GP or other health professionals.
Find an NHS talking therapies service – England only
www.nhs.uk/service-search/mental-health/find-an-nhs-talking-therapies-service
NHS Inform Scotland – Information about accessing talking therapies for those living in Scotland
www.nhsinform.scot/healthy-living/mental-wellbeing/therapy-and-counselling/talking-therapies-explained
NI Direct – A guide to accessing mental health services for people living in Northern Ireland
www.nidirect.gov.uk/articles/mental-health-services
NHS 111 Wales – Provides a summary of the mental health support available to people living in Wales, including Silvercloud, to which we refer previously in this booklet
https://111.wales.nhs.uk/encyclopaedia/m/article/mentalhealthandwellbeing
Family and friends may find it difficult to know how best to support their loved one when MS affects a person’s mental health. Here are five ways to support someone with MS (28).
Listening has great power. Listen actively by thinking about what the person is really saying rather than just the words that they are speaking. By listening, you will gain an understanding of what they are experiencing. Listening to someone does not mean that you have to do anything in particular to change their circumstances. Connect with what is being said rather than trying to put a positive spin on it.
If you feel able to help, ask what you can do rather than decide what the person needs. It is natural to feel over-protective to those close to us and to want to do as much as possible for them. However, think about how someone who is usually independent might experience extreme gestures of help and how this might affect their confidence. Equally, it is important to recognise that people might seem fine but still need some help. It might not be obvious that they are struggling physically or emotionally.
If you know more than one person with MS, think of them as unique individuals with their own experiences rather than trying to layer one person’s experience over the other’s. Just as no two people are the same, no two people will have the same experience of MS. Instead of second guessing what their lives are like with MS, invite them to talk about it.
Some people might have experienced radical changes to their lives. Their MS might have led to them having to give up work or change the type of work they do. This might have had a negative impact on their sense of self. Often our identity is closely linked to both personal and professional roles we hold. Changes to these can adversely affect how we see ourselves.
As the relative or friend of a person with MS, you might feel helpless and try to do what you can to ‘fix’ the condition. MS cannot be fixed. It is here to stay. By learning to accept this you will be able to help the person with MS also come to terms with their condition.
We asked the MS community to share with us some tips on how they manage their mental health whilst living with MS.
(1) Mind. Mental health facts and statistics. Published April 2017. Accessed June 2023. https://www.mind.org.uk/media-a/2958/statistics-facts-2017.pdf
(2) Frontiers in human neuroscience. A review on multiple sclerosis prognostic findings from imaging, inflammation and mental health studies. Brasanac J, Chien C. Published May 2023. Accessed June 2023. frontiersin.org/articles/10.3389/fnhum.2023.1151531/full
(3) New Pathways. Mar/Apr 2020, Issue 120. Low mood, Depression and MS. A. Nicklin. Published March 2020. Accessed June 2023.
(4) Depression. Published April 2023. Accessed June 2023. www.mind.org.uk/information-support/types-of-mental-health-problems/depression/causes
(5) Multiple Sclerosis: Scientists uncover a connection between MS lesions and depression. Last reviewed January 2023. Accessed June 2023. www.healthline.com/health-news/multiple-sclerosis-scientists-uncover-a-connection-between-ms-lesions-and-depression
(6) Nature mental health. Lesion network localisation of depression in multiple sclerosis. Siddiqi, S.H., Kletenik, I., Anderson, M.C. et al. Published January 2023. Accessed June 2023. nature.com/articles/s44220-022-00002-y#Sec3
(7) Anxiety and panic attacks. Published February 2021. Accessed June 2023. www.mind.org.uk/information-support/types-of-mental-health-problems/anxiety-and-panic-attacks/about-anxiety/?gclid=EAIaIQobChMIsfGNx5Hg6AIVKYBQBh2V6Qy_EAAYAiAAEgIc3_D_BwE
(8) What’s the difference between anxiety and depression? N. Ridgman. Published March 2021. Accessed June 2023. www.bupa.co.uk/newsroom/ourviews/2017/10/anxiety-depression
(9) New Pathways. May/June 2018, Issue 109. Anxiety and MS. J. Youssef & W. Loveday. Published May 2018. Accessed June 2023.
(10) Very well mind. Anxiety vs. Depression Symptoms and Treatment. D. Glasofer. Last reviewed September 2022. Accessed June 2023.verywellmind.com/am-i-anxious-4045683
(11) The National Center for Biotechnology Information (NCBI). Experience of Identity Change in People Who Reported a Diagnosis of Multiple Sclerosis. AB. Barker et al. Published Sep-Oct 2019. Accessed June 2023. ncbi.nlm.nih.gov/pmc/articles/PMC6819017
(12) Disability and Rehabilitation. MS and me: exploring the impact of multiple sclerosis on perceptions of self. L. Mozo-Dutton. Published 13 Dec 2011. Accessed June 2023. tandfonline.com/doi/abs/10.3109/09638288.2011.638032?src=recsys&journalCode=idre20
(13) New Pathways. July/August 2018, Issue 110. Living with MS can affect your feelings. J. Youssef & W. Loveday. Published July 2018. Accessed June 2023.
(14) The five stages of grief. Updated June 2022. Accessed June 2023. www.psycom.net/stages-of-grief
(15) New Pathways. Sept/Oct 2018, Issue 111. MS and anger. K. Rogers. Published Sept 2018. Accessed June 2023.
(16) The National Center for Biotechnology Information (NCBI). Impact of anger on the health-related quality of life of multiple sclerosis patients. A. Labiano-Fontcuberta et al. Published April 2015. Accessed June 2023. ncbi.nlm.nih.gov/pubmed/25432951
(17) New Pathways. May/June 2019, Issue 115. How to manage frustration. R. Murray. Published May 2019. Accessed June 2023.
(18) New Pathways. Jan/Feb 2019, Issue 113. MS and guilt. A. Nicklin. Published January 2019. Accessed June 2023.
(19) New Pathways. July/Aug 2019, Issue 116. MS and change. A. Nicklin. Published July 2019. Accessed June 2023.
(20) Human Givens Institute. 7-11 breathing: How does deep breathing make you feel more relaxed? 26 October 2012. Accessed June 2023. hgi.org.uk/resources/delve-our-extensive-library/resources-and-techniques/7-11-breathing-how-does-deep
(21) Food and mental health. Published March 2023. Accessed June 2023. www.mind.org.uk/information-support/tips-for-everyday-living/food-and-mental-health
(22) The National Center for Biotechnology Information (NCBI). Exercise for Mental Health. A. Sharma. Published 2006. Accessed June 2023. ncbi.nlm.nih.gov/pmc/articles/PMC1470658
(23) Positive Psychology. The Neuroscience of Gratitude and How It Affects Anxiety & Grief. M.R. Chowdhury. Last reviewed March 2023. Accessed June 2023. https://positivepsychology.com/neuroscience-of-gratitude
(24) 8 grounding techniques for when you’re feeling overwhelmed. Last reviewed August 2021. Accessed June 2023. www.talkspace.com/mental-health/conditions/articles/grounding-techniques-anxiety
(25) Counselling directory. Grounding techniques for stress, anxiety and panic attacks. Last reviewed January 2023. Accessed June 2023. counselling-directory.org.uk/memberarticles/grounding-techniques-for-stress-anxiety-and-panic-attacks
(26) MS-UK Blog. 5 steps to kick-start mindfulness for your MS. Z.Flint. Published 20 Jan 2020. Accessed June 2023. ms-uk.org/blog/5-steps-to-kick-start-mindfulness-for-your-ms
(27) National Institute of Clinical Care Excellence (NICE). Depression in adults: recognition and management [NG222]. Published June 2022. Accessed June 2023. nice.org.uk/guidance/ng222
(28) National Alliance on Mental Illness (NAMI). The Mental Health Benefits of Religion & Spirituality. L. Greenstein. Published 21 December 2016. Accessed June 2023. nami.org/Blogs/NAMI-Blog/December-2016/The-Mental-Health-Benefits-of-Religion-Spiritual
(29) MS-UK blog. 12 of the best mental health apps. Published June 2022. Accessed June 2023. ms-uk.org/blog/mental-health-apps
(30) Psychology Today. 5 things to look for in a life coach. Published July 2017. Accessed June 2023. psychologytoday.com/gb/blog/the-angry-therapist/201707/5-things-look-in-life-coach
(31) Cognitive behavioural therapy (CBT). Published September 2021. Accessed June 2023. www.mind.org.uk/information-support/drugs-and-treatments/cognitive-behavioural-therapy-cbt/about-cbt
(32) Journal of Rehabilitation Medicine. Cognitive Behavioural Therapy in Multiple Sclerosis: A Randomized Controlled Pilot Study of Acceptance and Commitment Therapy. L. Nordin. Published January 2012. Accessed June 2023. medicaljournals.se/jrm/content/abstract/10.2340/16501977-0898
(33) Science repository. Acceptance and commitment therapy for people with multiple sclerosis: a non-concurrent multiple baselines design. Caroline van Heugten, Ieke Winkens, Iris de Marez Oyens, Nicole Geschwind, Yvonne Bol. Published June 2020. Accessed June 2023. sciencerepository.org/acceptance-and-commitment-therapy-for-people-with-multiple-sclerosis_NNB-2020-2-113
(34) Positive Psychology. How Does Acceptance And Commitment Therapy (ACT) Work? C. Ackerman. Published Last reviewed April 2023. Accessed June 2023. positivepsychology.com/act-acceptance-and-commitment-therapy
(35) MS Trust. Ask the expert: Mental health and MS. J. Johnson. Published July 2017. Accessed June 2023. mstrust.org.uk/news/views-and-comments/ask-expert-mental-health-and-ms
(36) New Pathways. Jan/Feb 2018, Issue 107. 5 ways to support someone with MS. N. Conlon Vaswani. Published January 2018. Accessed June 2023.
