Mood Changes in MS

While physical symptoms of MS are often the first to develop and easiest to notice, there are other, less obvious changes that can also have a big impact. These include problems with memory, attention and concentration, as well as mood changes like grief, depression or anxiety. These changes are very common and can happen depending on which parts of the brain are affected by the disease. Even though mood changes can be invisible to others, they can have a very real effect on:

• Lifestyle: It may get harder to socialize or take part in everyday life
• Employment or education: Challenges with organizing or remembering details or events can affect how someone does their job or schooling
• Relationships: Spouses and children may struggle to understand changes in behaviour
• Physical symptoms: Mood changes may make symptoms like fatigue and pain feel worse

Mood changes are among the most treatable symptoms of MS. With the appropriate strategies and tools in place, people with MS can live their best lives and take an active role in their own care.

For most, an MS diagnosis comes in their 20s or 30s, just as they’re figuring out who they are and establishing their identity in different parts of their adult life, like: 

• Career
• Relationships
• Parenting
• Personal growth and life skills 

Finding out you have MS can bring a deep sense of loss. It’s normal to grieve, not just after diagnosis, but at different points along the way. Changes in mobility, memory, vision, or self-care can affect how you see yourself and your place in the world.

Grief is a healthy response. Talking to a psychotherapist early on can help you process these feelings and can feed into strategies for coping and healthy adjustment. But if grief lingers for weeks or months without relief, or if joy feels out of reach, it may be a sign of depression. That’s when it’s important to seek professional support.

While feelings of sadness or irritability are well known signs of depression, it often includes other feelings too. A person could lose interest in activities that they used to enjoy, like hobbies, time with friends, or sexual activity. Depression can also include physical symptoms, like changes in appetite, sleep, energy level and ability to concentrate.

Because symptoms of MS are different for everyone, signs of depression can also look different for each person. Over the past two weeks, have you noticed feeling down, depressed, or hopeless? Maybe you've found that things you usually enjoy just don't bring the same pleasure or interest. If either of these feelings sound familiar, it could be a sign of depression. Let your healthcare team know how you're feeling, they're there to support you, and early conversations can make a real difference.

Fatigue and Depression

Fatigue is one of the most common symptoms of depression. Someone who is depressed may sleep a lot or feel too exhausted to leave the house to go to work or engage in activities they usually enjoy. Sometimes, this can become a cycle that’s hard to break. When someone is less active, their physical health may decline, possibly leading to increased fatigue and depression, making it harder to stay active. 

Who Gets Depression

Depression is one of the most common challenges for people living with MS. Sometimes, depression develops as a response to living with the disease and adjusting to a new reality. Half of all people with MS will experience a major depressive episode at some point in their lives, a rate that’s higher than in the general population or in other chronic diseases.

• Depression may occur because of changes in the brain caused by MS.
• Each person's experience of depression is unique to them, though there are common elements which help make the diagnosis.
• Depression can range from mild to severe and can happen at any point in the disease course.
• There are many effective treatments for depression in a person with MS. 

How to Manage it

If you’ve been experiencing symptoms of depression for more than a few weeks, it’s important to talk to your healthcare provider. They can help guide you toward the right support, which may include connecting you with a mental health specialist. The most effective way to treat depression usually involves a combination of three main approaches: psychological therapy, physical activity and medication. 

1. Psychological therapy: The best evidence for treatments of depression includes psychological therapies like cognitive behavioural therapy (CBT), which helps people recognize and shift unhelpful thoughts and behavioural patterns. It works well for many, but your psychotherapist will help find what’s right for you. Self-help groups can also offer support and connection. They’re not a replacement for treatment, but they can be a meaningful part of your support system.

2. Physical activity: Regular structured physical activity can help people with MS manage depression. Current guidelines suggest around 30 minutes of aerobic activity twice per week and 30 minutes of resistance exercise twice per week. For exercise to be effective, it has to be accessible for you, and it may be helpful to ask a physiotherapist for guidance on how to create a program that works for you, either individually, or as part of a group.

3. Medication: Antidepressant medications can be effective, although it may take a bit of patience and persistence to find the one that works best for you. Psychiatrists (who are medical doctors) can prescribe antidepressant medication; while they can also provide counseling, they typically will refer people to psychologists, social workers or therapists.

Check out our wellness and exercise programs, and resources to help you get started. The important thing is to not let depression go untreated. It can’t be overcome by willpower or determination, and it’s not a sign of weakness or lack of character. 

Thoughts of Suicide

Because depression can be associated with suicidal feelings, it’s important not to ignore it or hope it will go away. Depression is more strongly linked to suicide than physical symptoms like changes in mobility or vision. Studies suggest that people living with MS may face up to twice the risk of suicide compared to the general population. Recognizing and addressing depression early can make a significant difference in quality of life.

If you are having thoughts of suicide, please contact your healthcare team, call 911 or connect with a mental health/distress helpline. You can also reach out to the 9-8-8 Suicide Crisis Helpline anytime, anywhere in Canada, by text or phone.

Like depression, anxiety is also more common in people living with MS than in the general population. Research shows that up to half of those living with MS may experience an anxiety disorder during their lifetime. The most common types are generalized anxiety disorder, followed by phobias and panic disorder.

Generalized anxiety can make someone feel constantly tense or worried, even when there doesn’t seem to be an obvious cause. For someone living with MS, that’s understandable. Symptoms like pain, fatigue, or other symptoms can show up suddenly, making life unpredictable and adding to anxiety.  

How to Manage Anxiety

• Cognitive Behavioural Therapy (CBT), Mindfulness-based interventions and relaxation training can be helpful, along with other psychotherapy techniques.
• Sometimes medications like antidepressants can help with symptoms of anxiety. 

Your doctor or mental health professional can help you find the right combination of treatments for you. Ways to manage daily stressors can be found in our resource on Stress and Multiple Sclerosis.

While some people who experience depression and anxiety with MS may feel that they’re stuck in one emotion all the time, others may go through frequent mood changes, feeling calm one moment and then suddenly becoming irritable or angry. 

While mood changes are sometimes a reaction to certain situations, they can also happen without any clear cause. This can be confusing not only for the person with MS, but also for family, friends, and coworkers. This type of mood change can be part of depression, or it can exist on its own.

Frequent mood changes and irritability can be signs of other medical conditions too. It's important to talk with your healthcare team so they can help figure out what's causing these changes and what can be done to manage them.
 

How MS Mood Changes Affect Family Life 

Mood changes in a parent or caregiver can be tough on children, especially mood swings, sudden anger and irritability. Children usually assume they have caused the changed mood, but they should be reassured that not all emotional changes are because of them. At the same time, it’s important to let them know that their behaviour can sometimes upset you and that not everything is related to your MS. 

• Children know when somethings wrong, even when parents try their best to hide the truth.
• Children are quick to notice physical and emotional changes.
• Children can experience self-blame for the physical and emotional changes they notice in their parent.

Children should be included in discussions, encouraged to talk about their own feelings, and to feel that their opinions or concerns matter. They need to be able to trust you, and being honest with them will help achieve that. It’s important to have a support network to avoid relying too heavily on the emotional support and companionship of your children.

Partners and Couples

Both people living with MS and their partners can experience symptoms of anxiety and depression. In relationships where partners also take on a caregiving role, research shows that caregiver stress is not linked to the physical condition of the person with MS but is more related to the mental condition of the person with MS.

Managing Mental Health for Caregivers 

• The first step is to inform your healthcare team about how you’re feeling.
• Access caregiver supports. Along with respite supports and other interventions, sharing experiences with others in similar situations can offer comfort, support and understanding.
• Encourage your partner with MS to seek help. People living with MS should discuss any new or worsening symptoms - mental or physical - with their healthcare team.
• Practice self-care. Maintaining social relationships, having an exercise routine, and trying alternative therapies like meditation, massage, or connecting with nature may all help relieve stress. 

Mental Health Specialists

Psychiatrist: medical doctor who can prescribe medications and perform procedures. They understand both mental and physical health conditions and how they interact. 

Clinical Psychologist: assess, diagnose, and treat mental health conditions. Clinical psychologists are trained in psychotherapy and receive additional training to work with certain groups like children, adolescents, and families. 

Neuropsychologist: specialized in brain health and its relationship to behaviour and cognition (thinking, memory etc.). They perform cognitive testing to identify changes related to memory, language and thinking and will provide recommendations to help manage these changes. 

Psychotherapist: trained in talking therapies like CBT and other therapies and work with individuals, couples, or families to address mood and behavioural issues. 

Clinical Social Worker: trained in talking therapies but also provide support to a person’s overall well-being. They’ll consider things like community involvement, healthcare needs, and income to address barriers and improve a person’s quality of life. 

Other types of mental health providers can include family physicians, addictions counsellors, Indigenous Helpers & Elders, peer support workers, occupational therapists (OTs), crisis line workers, and case managers. 

The first step in accessing mental health supports is to notify your healthcare provider. 

Bipolar Disorder

People with bipolar disorder go through alternating episodes of depression and mania.  Mania refers to periods of hyperactivity, excessive cheerfulness or irritability, rapid speech and similar symptoms. Extreme changes in energy, activity, sleep and behavior go along with these changes in mood. 

A person might be going through a bipolar episode if they show manic or depressive symptoms nearly all day, every day, for at least one to two weeks. Manic episodes usually last seven days, and depressive ones last at least 14. These episodes seriously affect daily life.

Depression and mania can sometimes happen as a side effect of high-dose corticosteroids that are often used to treat MS relapses, so it’s important to let your doctor know if you have a history of bipolar disorder or depression if they’re recommending this treatment. Also, sometimes antidepressants prescribed to treat depression can trigger mania in a person with bipolar disorder, so caution is required.  

Pseudobulbar Affect

About 10 percent of people with MS experience sudden, uncontrollable bursts of laughter or crying because of a condition called pseudobulbar affect (PBA). It’s caused by brain changes from MS that disrupt emotional signals. Sometimes, PBA episodes exaggerate an emotion that a person’s feeling; other times, their reaction doesn’t match their feelings at all, like laughing or crying without any obvious reason.

PBA is usually treated with antidepressant medications. While talk therapy like CBT doesn’t treat the neurological cause, counseling can help people, and their families manage the emotional impact and episodes.

9-8-8 Suicide Crisis Helpline – If you’re thinking about suicide, or are worried about a friend or loved one, the 9-8-8 Suicide Crisis Helpline is available 24/7 by phone and text.

BounceBack® - Telephone and online-based skill-building program offered through the Canadian Mental Health Association (CMHA)

Kids Help Phone – Provides 24/7 phone, text, and online mental health support to Canadians aged 5 to 29. 

Canadian Mental Health Association- Nationwide organization offering mental health resources, programs, and advocacy. 

Mental Health Resources from the Government of Canada- Provides provincial/territorial helpline and mental health support information.

Centre for Addiction and Mental Health - Mental Health 101 series offers online tutorials to learn more about mental health.

Resiliency: Addressing the challenges of MS (watch the video on YouTube).

Hear from the Experts: Managing Mental Health Associated with Chronic Illness (June 13, 2023).