Mood & Emotions

Living with Multiple Sclerosis (MS) can affect your emotions for several reasons. The emotional changes you experience may be a direct symptom of MS due to nerve damage in certain areas of the brain, a natural and understandable reaction to the challenges of living with the condition, or as a result of side effects of medications used to treat MS or its symptoms. Emotional changes may also be related to other life stressors or transitions. Often, these emotional changes are not due to a single cause but rather a combination of factors.

Impact of your Condition

Being diagnosed with a long-term condition like MS can be emotionally overwhelming. Whether you anticipated the diagnosis or not, coming to the realisation that MS is a lifelong condition that can change over time may bring significant emotional strain. The impact of MS varies from person to person and can change from day to day, making it hard to predict and adapt to its progression. For those with relapsing-remitting MS, the unpredictability of relapses and their effects can be particularly challenging. Meanwhile, those with progressive MS may feel distressed by the lack of treatment options and the uncertainty of how quickly their condition may progress. Planning for the future can be difficult when facedwith such uncertainty, adding to the emotional burden.

MS and Nerve Damage

The brain controls both conscious and unconscious actions by sending messages to all parts of the body. Different parts of the brain control different things. The limbic system is responsible for the control of reactions and behaviours. For example, when you feel a happy emotion, your outward expression may be to smile. Regardless of your personality, nerve damage and lesions in the brains emotional centres and connections can affect the way you feel or react and can contribute to you behaving in a way that seems out of character, particularly with those closest to you. Not everyone living with MS will experience these changes and the experience can be unique to each person.

Side Effects of Drugs

Certain medications used to treat MS can also contribute to emotional changes. If you suspect that your medications are affecting your emotions, it is important to discuss this with your GP, neurologist, or MS nurse.

Being diagnosed with MS can be emotionally overwhelming. Whether expected or not, the realisation that MS is a lifelong, unpredictable condition can bring significant emotional strain. The nature of MS, varying from person to person and fluctuating day to day, adds to the difficulty in adapting. This uncertainty can make future planning difficult, adding to the emotional burden.

Stress and Anxiety

The unpredictable nature of MS and the significant changes it brings can be a major source of stress. This stress can lead to anxiety, which is more prevalent in people living with MS than in the general population. MS Ireland’s Societal Cost of MS 2022 report found that 29% of survey respondents reported having been diagnosed with or treated for anxiety. Anxiety may manifest physically, causing symptoms like headaches, palpitations, and muscle tension. Some people may also experience panic attacks.

Learning how to manage stress is crucial, as unmanaged stress can worsen MS symptoms or even trigger new ones. It’s important for people living with MS and their families to recognise and address stress rather than avoid it.

Shock, Fear, and Denial

The initial shock of an MS diagnosis can leave people feeling overwhelmed and disconnected. Common expressions include “It hasn’t really sunk in yet” or “I feel numb.” This reaction can also occur later if new or more severe symptoms develop. Denial can serve as a temporary coping mechanism, providing a necessary pause to adjust to the reality of MS. However, it is important to remember that denial can sometimes impact our ability to make necessary lifestyle adjustments and can delay us seeking appropriate medical or other help or support. This has the potential to compromise health. For example, if you develop a bladder problem, and your natural response is to deny or avoid seeking help, you may go on to develop a complication, which might have been avoided had the problem been addressed at an earlier stage.

Grief and Loss

Living with MS can bring about a profound sense of loss for some people. This might include losing the ability to drive, work, or participate in certain social activities. The process of grieving these losses varies greatly among people living with MS, but it often involves a range of emotions, including shock, fear, denial,
anger, and sadness. This process, sometimes referred to as the “cycle of grief,” isn’t linear or predictable; not everyone will experience all these emotions, nor will they experience them in the same order.

Grief may resurface with each new symptom or progression of the disease. For instance, someone might feel they have adapted to living with MS, only to experience grief again when new symptoms arise or existing ones worsen or impact an every day activity in a new way. This ongoing process of adaptation is a necessary response to the continuous changes brought on by the condition.

Anger and Frustration

Realising that you may no longer be able to do something you once could, often leads to feelings of anger and frustration. These emotions are normal. Over time, as people living with MS begin to adjust to their new reality, these feelings may diminish. This adaptation process can take time.

Acknowledgement, Accommodation, and Adaptation

Coming to terms with MS involves acknowledging its impact and finding ways to adapt. While the idea of “accepting” MS can be difficult, many people find that, with time, they can acknowledge the condition and integrate it into their lives. This process involves getting to know one’s own symptoms, discovering new ways to manage them and seeking support when needed.

The period between the onset of a new symptom and finding a way to manage it can be particularly challenging. However, once a plan to manage a new symptom is in place, people often feel more at ease with their situation.

Guilt

Feelings of guilt are common among people living with MS. They may feel as if they have let down their family and friends. They may also feel guilt in relation to perceived burden or increased responsibility on others in their family as a result of their MS. They may also find that they are not able to parent or play with their children in the way they would like to. Family members may also inadvertently exacerbate these feelings by blaming the person living with MS for challenges such as financial hardship or relationship issues. Open communication with the people closest to you and understanding the myriad of challenges can help alleviate these feelings of guilt.

Psychological Reaction to MS

Adapting to the changes and uncertainty brought by MS can trigger a wide range of emotions such as grief, anxiety, guilt, fear, irritation, and anger. These reactions are natural and will vary greatly from person to person, influenced by the symptoms experienced, personal coping mechanisms, and individual personality traits.

The Emotional Impact on Family

MS affects not only the individual but also their family. It can feel like an uninvited guest disrupting the family’s dynamic. Family members may experience their own forms of grief and loss, and the roles within the family may need to shift to accommodate the needs of the person living with MS. This adjustment can be emotionally challenging, and each family member may cope differently. Open communication is vital but can be difficult. Some may find it hard to discuss the emotional and psychological impact of MS, while others may struggle more with the physical aspects. Family therapy or individual counselling can be helpful in navigating these complex emotions and improving communication.

Understanding these emotional responses and learning how to manage them is crucial for maintaining mental and emotional wellbeing.

Stress and Anxiety

Identifying and managing stress is essential. Here are some examples of things you can explore to manage stress:

Change What You Can: Focus on aspects of your life where you can make changes, like adjusting your workload or delegating tasks.
Accept What You Can’t Control: Practice identifying and letting go of situations beyond your control and finding constructive ways to spend your time.
Keep a Stress Diary: Document stressful events, your reactions, and possible solutions. This practice
can help you identify patterns and develop better coping strategies.
Have Back-Up Plans: Prepare for the unpredictability of MS by having alternative arrangements, such as support from family, friends, or colleagues with tasks.
Stress-Busting Activities: Engage in regular exercise, relaxation techniques, and hobbies that bring you joy. Consider activities that can help to manage stress like yoga, meditation, journaling and mindfulness. Numerous studies have shown that engaging in regular physical activities like yoga, walking, or swimming can significantly reduce stress, release endorphins, which are natural mood lifters, and improve sleep, which is often disrupted by stress. Getting outside in nature is also a natural mood lifter.

Fear and Anxiety

Fear and anxiety are common when facing the unknown, and living with MS means grappling with unpredictability. Concerns about daily symptoms, potential relapses, or the future can weigh heavily on the mind. Here are some strategies to manage these feelings:

Express Your Worries and Fears: Speaking your worries aloud can help you see them more objectively. Sharing these feelings, in a contained way and time with a trusted friend, family member, counsellor, psychologist, or other healthcare professional can provide comfort and perspective.
Learn and practise breathing and relaxation exercises
Schedule ‘Worry Time’: Set aside five minutes each morning and evening to focus on your worries. This designated time allows you to acknowledge your fears without letting them dominate your day.
Write an Anxiety Rescue List: Create a list of actions or positive messages that help calm you during anxious moments. Keep this list accessible for quick reference.
Tackle Unhelpful Thinking Patterns: Recognise and challenge unhelpful negative thinking patterns, such as all-or-nothing thinking, exaggerated thinking, or expecting the worst. Acknowledge and notice when you’re feeling anxious. Reframe these thoughts to more balanced and positive ones.

Low Self-Esteem

MS can impact self-esteem as it can change what you can do. Combat negative self-perceptions with these strategies:

Challenge Your ‘Inner Critic’: Counteract negative self-talk with evidence-based reflections on your strengths and contributions. Recognise that thoughts are not facts. Ask yourself whether there is any evidence for the negative thought.
Positive affirmations: Reiterate positive affirmations and focus on what you can still enjoy and accomplish.
List Your Talents and Skills: Remind yourself of your abilities and hobbies. Consider revisiting old interests or exploring new ones.
Surround Yourself with Supportive People: Spend time with those who uplift you, and educate your circle about MS to foster understanding and support.

Guilt

Feeling guilty about the impact of MS on loved ones is common. Address these feelings by:

Assessing Why You Feel Guilty: Understand the root of your guilt, which may reveal deeper future concerns such as feeling like a burden on others.
Adjusting Your Expectations: Accept that MS may require you to do things differently and that this is okay.
Talking to Family and Friends: Open conversations can alleviate unnecessary guilt and help you be kinder to yourself.

Low Mood

Low mood is a common experience for people living with MS and can significantly affect daily life. Fluctuating symptoms, fatigue, and the uncertainty of the condition may contribute to feelings of sadness or emotional fatigue. These episodes of low mood may not always meet the clinical criteria for depression but can still impact wellbeing. It’s important to monitor your emotional health and seek support if low mood becomes frequent or overwhelming. Addressing low mood early on may prevent further emotional distress and enhance overall quality of life.

Depression

Depression is a serious concern for many people living with MS. MS Ireland’s Societal Cost of MS 2022 report found that 29% of survey respondents reported having been diagnosed with or treated for depression. If you experience persistent sadness, loss of interest, or feelings of worthlessness, hopelessness or helplessness seek help from a healthcare professional.

Contact your GP, and discuss with your neurologist or MS Nurse. Additionally:

Exercise Regularly: Physical activity can boost mood and energy levels.
Eat Healthily: A balanced diet supports stable blood sugar levels and overall wellbeing.
Rest Regularly: Managing fatigue can prevent emotional lows.
Engage in Enjoyable Activities: Adapt past hobbies or discover new interests to maintain a fulfilling life.
Spend Time with Others: Social interactions can be a source of comfort and positivity.

Anger

Anger can arise from the frustration of living with MS. Manage this emotion by:

Identifying the Root Cause: Recognise that your anger may be directed at MS rather than those around you.
Communicating Your Feelings: Share your experiences with loved ones to garner support and understanding.
Calming Techniques: Use methods like deep breathing or counting to ten to regain control.

Denial

Denial can be a natural initial response but may hinder necessary care and adjustments. Try to be open about discussing how you are feeling and seek support and information from healthcare professionals.

Out of Control Emotions (Emotional Lability)

Some people living with MS may experience sudden and intense emotional reactions. If this occurs, you may wish to consult a healthcare provider such as your GP, MS Nurse, Neurologist or mental health practitioner for support and appropriate interventions.

Self-management Techniques

Maintaining a generally healthy lifestyle is crucial for supporting emotional wellbeing as a self- management technique. Regular physical activity, a balanced diet, adequate sleep and stress reduction practices not only enhance physical health but also positively impact mood and mental resilience.

When self-help strategies are insufficient, professional support such as talk therapies can be invaluable.

Here are some examples:

Counselling, Psychotherapy and Psychological Support: These provide a safe space to explore feelings and develop coping strategies.

Different approaches of counselling and psychological therapy include:

Person-Centred Therapy: This focuses on helping people heal through empathy, unconditional positive regard, and genuine understanding from the therapist.
Cognitive Behavioural Therapy (CBT): CBT helps change unhelpful negative thought patterns and behaviours, offering practical solutions for managing emotions.
Acceptance and Commitment Therapy (ACT) and Compassion Focussed Therapy (CFT): Both are psychological approaches promoting acceptance, mindfulness and self-compassion to reduce distress.

If you are accessing psychological support and counselling, your therapist, counsellor or psychologist should be registered with a professional body, such as Irish Association for Counselling and Psychotherapy (IACP), Psychological Society of Ireland (PSI) or other recognised professional bodies.

Living with MS involves navigating a complex emotional landscape. However, with the right tools and support, it’s possible to manage these emotions and lead a fulfilling life.

Remember, you’re not alone, seek help when needed and connect with others who understand your journey.

Trigger Warning: This section delves into the more serious effects of mood, depression, and emotional issues relating to MS, going beyond the challenges discussed in previous sections.

MS is not always just a physical condition; it can have a profound effect on emotional and psychological wellbeing. Here, we explore emotional and behavioural symptoms that, although less common, can impact people living with MS. Understanding these issues is essential for both people living with MS and caregivers to navigate the emotional landscape of MS and seek necessary support.

Depression

Depression is a complex and often misunderstood condition that goes beyond occasional feelings of sadness. For individuals with MS, depression can manifest as a severe and persistent condition, impacting their ability to function and live a fulfilling life.

Clinical depression is not merely
a brief period of feeling down; it involves a variety of symptoms that persist for at least two weeks and significantly interfere with daily life.

For a diagnosis of clinical depression, symptoms must be severe enough
to disrupt daily routines, affect relationships, or impair work performance.

The Importance of Seeking Help

Clinical depression is often misunderstood, leading many to dismiss its seriousness or hesitate to seek help. However, it is a manageable condition, and early intervention can significantly improve outcomes. If you suspect you are experiencing depression, it is vital to consult a healthcare professional promptly. Remember, depression is not something you can simply “snap out of,” and seeking help is a brave and essential step towards recovery.

Differentiating Depression from Other MS Symptoms

MS can cause a range of symptoms that overlap with those of depression, such as fatigue. This overlap can make it challenging to determine whether these symptoms are due to depression, MS itself, or a combination of both. A specialist can help distinguish between these causes and recommend appropriate treatment.

The Relationship Between Disability, MS Progression, and Depression

Interestingly, depression in MS is not directly correlated with the level of physical disability or the duration of the disease. Individuals with minimal physical impairment may experience severe depression, while those with significant disability might not. Similarly, both newly diagnosed patients and those with a long history of MS are equally at risk of depression.

Some studies suggest that depression may be more prevalent among those with relapsing-remitting MS compared to primary progressive MS. This could be due to differences in life stages at diagnosis or the unpredictability of relapses.

The Role of Nerve Damage in MS-Related Depression

Research indicates that depression in MS may partially result from nerve damage in specific brain areas. However, psychological reactions
to living with the disease, social circumstances, and medication side- effects also play significant roles.

Treatment Options for Depression

Antidepressants: Various medications, including selective serotonin reuptake inhibitors (SSRIs) like fluoxetine (Prozac) and sertraline (Lustral), are commonly used. Tricyclic antidepressants, such as amitriptyline, are less common due to their side effects, which can exacerbate other MS symptoms. It is important to consult with a healthcare provider before making any changes to medication.

Talk Therapies: Psychotherapy, including Cognitive Behavioural Therapy (CBT), Acceptance and Commitment Therapy (ACT) and Compassion-Focused Therapy (CFT) can help develop coping strategies. These therapies are often most effective when combined with meditation.

Suicide Risk

There are some people living
with MS and severe depression
who experience hopelessness, helplessness and worthlessness, and who may lose the desire to live. Research to date does not indicate that the level of disability is linked
to the risk of suicide; instead, it appears to be related to depression and social isolation. The frequency of people with MS attempting suicide is around seven and a half times higher than it is for the general population. This underscores the importance of discussing emotional struggles and depression and any suicidal thoughts or behaviours with healthcare professionals and seeking support.

If you are having thoughts of harming yourself or suicide, seek help through emergency services or your GP.

Information on resources is available later on this page.

In addition to depression, people with MS, just as in the general population may experience other mood disorders, including bipolar affective disorder, psychosis, emotional lability, uncontrollable laughing or crying, emotional crescendo, and euphoria. These conditions can complicate the emotional landscape of living with MS, and each requires a tailored approach to treatment and support.

Bipolar Affective Disorder (Manic Depression)

Bipolar affective disorder, sometimes called ‘manic depression,’ is less common than clinical depression in people with MS. It is a mood disorder where moods swing from highs (mania) to lows (depression). The depressive symptoms are similar to those of regular depression.

Manic symptoms include excessive activity, needing little sleep, racing thoughts, elevated or euphoric mood, and exaggerated self-importance. Some people may feel irritable instead of euphoric and believe they are being persecuted instead of feeling grandiose.

Bipolar affective disorder affects about 1% of the general population, but it may be twice as common among people with MS, although the reasons for this are unclear.

Psychosis

Psychosis is where people are unable to distinguish between what is real and what is imaginary. This may be more common in people with MS, but it’s still very rare. Treatment with antipsychotic drugs may help. It is advisable to link in with your healthcare provider for support.

Mood Swings and Emotionalism

Some people living with MS describe mood swings, where moods switch rapidly from one state to another. Others describe emotional upheavals, like bouts of anger or heightened sensitivity, where they become highly emotional very easily and seem unable to stop. These symptoms affect only a small minority of people with MS. Because these are much rarer, there is much less research on these.

As a result, there are few established approaches available to help healthcare professionals assess them, and they are harder to diagnose.

Emotional Lability

Emotional lability refers to a condition where people experience sudden
and intense shifts in their emotions, making them difficult to control. This can lead to exaggerated reactions, such as crying or anger, in response to minor events. Unlike typical moodiness or mood swings, emotional lability is more severe and is often linked to brain nerve damage.

People with emotional lability may experience rapid changes in their emotions, such as suddenly bursting into tears or getting very angry, which may seem disproportionate to the situation. These emotional outbursts are usually triggered by specific events.

It can be hard to distinguish between emotional lability and moodiness caused by stress. Therefore, it’s important to consult a healthcare professional for a proper diagnosis and treatment. This can also help family and friends develop suitable coping strategies.

Uncontrollable Laughing/Crying

Uncontrollable laughing or crying, also known as ‘affective release’ can affect around 10% of people with MS. This can be a result of some of the brain changes related to MS.

People with this symptom might laugh when they’re sad or cry when they’re happy. These episodes are involuntary, unrelated to their actual feelings or what’s happening around them, and can’t be controlled. This can be confusing and upsetting for the person and those around them, making it hard to understand their true feelings.

There are treatments available to help manage this condition. Speaking to a healthcare provider is the first step.

Emotional Crescendo

Emotional crescendo, also known as increased sensitivity, is a symptom where relatively minor issues can trigger a strong and seemingly uncontrollable emotional response. This response quickly builds up to a peak, unlike uncontrolled laughing and crying, the emotions expressed usually match how the person feels.

This symptom can cause difficulties in relationships, as even small discussions can quickly turn to tears, arguments, and estrangement. The exact cause is unknown, but it’s likely a mix of factors like nerve damage, stress, and psychological reactions to MS.

Euphoria

Euphoria is marked by an unusually cheerful mood, even during tough times. People with euphoria may seem oddly unconcerned about their worsening physical condition and show an out-of- place optimism. While some may display their feelings of euphoria openly, others may mask their true feelings.

Unlike mania in bipolar disorder, euphoria is a steady, rather than fluctuating, state, and does not involve a burst of new ideas or activities.

Around 10% of people with MS experience euphoria, likely due to nerve damage in the brain. It is more common in advanced stages of MS or those with significant cognitive issues. Although some view euphoria as a ‘merciful symptom’ that keeps sadness at bay, it’s crucial for carers to recognise it. If not acknowledged, it can lead to problems, such as a lack of appropriate care.

Supporting and informing family, friends, and carers about euphoria can help them understand and provide better support.

MS can lead to behavioural symptoms that overlap with cognitive difficulties, impacting thought processing, concentration, planning and executive functions.

Disinhibition

Disinhibition can involve impulsive responding, a lack of restraint, leading to disregard for social norms, or risk- taking behaviours. Disinhibition can range from mild to severe, including saying inappropriate comments or doing risky or impulsive actions.

This behaviour can be distressing for family and carers, but appropriate support, and education, possibly including cognitive behaviour therapy and family therapy can help.

Lack of Insight

Some people with MS may not appreciate or understand the extent of their situation or how their actions affect others. This issue, affecting a small percentage of people with MS, can create difficulties, especially in decision-making. Family and friends may need to intervene, which can be challenging. Talking therapies can assist families in managing this issue.

Lack of Initiation

Difficulty starting tasks, such as dressing or engaging in activities, can occur due to damage in the frontal lobes. This cognitive and behavioural issue may be mistaken for laziness
or depression. Understanding the problem can reduce frustration,
and consulting professionals like psychologists or occupational therapists can offer effective strategies.