Multiple Sclerosis & Mental Health: An Introductory Guide

MS & Mental Health

MS is a disease that can impact someone’s quality of life, as patients may experience changes and challenges with ambulation, strength and physical ability, skin changes, speech issues, vision and hearing loss, neurological and cognitive issues, sexual problems, and bowel and bladder concerns. These symptoms can take a toll on the mental health of someone living with MS.¹

The duration of these symptoms in someone living with MS may impact their mental health. The longer a symptom or set of symptoms last, the more their mental health may be affected. People living with MS have to cope with adjusting to new barriers to living their life on their terms and these symptoms can become discouraging for some. There may be fear with MS if quality of life deteriorates, and fear can be carried in the body and come out as stress, depression, and anxiety.¹

“Receiving a diagnosis of Multiple Sclerosis (MS) can take much adjustment emotionally and can include many reactions including grief, anxiety, anger and guilt. The unpredictability of MS and not knowing how the potential course of the disease will affect you, as well as facing the many choices that being diagnosed with a progressive disease now brings, such as choosing a healthcare provider, choosing among the many treatment medication options, figuring out insurance questions, all can be overwhelming.” – Andrea Arzt, LCSW, MSCS, Director of Healthcare Provider Engagement for the National Multiple Sclerosis Society¹⁰

Multiple Sclerosis Psychiatric Symptoms

MS can certainly increase the likelihood of or exacerbate any mental health issues, even if they were managed well prior to an MS diagnosis. Given a new set of circumstances and life trajectory changes with an MS diagnosis, past feelings of trauma, anger, fear, and depression can be triggered as a response. For those with no history of mental health concerns, it is still possible for MS patients to experience some psychiatric symptoms, including depression and anxiety.²

MS & Depression

MS may cause many physical, psychological, and emotional changes that impact someone’s overall physical and mental functioning as well as their overall quality of life. As a result, MS patients may be prone to depression and suicidality. Given that MS can be a difficult diagnosis to receive, patients may have poor coping mechanisms even with a strong support system, in addition to feelings of hopelessness, grief, despair, and loss. When these feelings become greater and larger, they might spiral into depression.

Depression in its more severe forms can negatively impact cognitive capacity. There are also physical changes that happen in the brain for someone with an MS diagnosis, which plays a factor in the prevalence and severity of depression. MRIs show that there are lesions in the brain when an individual has MS. There can also be small changes in the brain tissue in the parts of the brain associated with mood and personality.³

According to Arzt, “In Multiple Sclerosis, depression and other mood issues can be part of the disease process itself, not just a reaction to living with the disease. 60% of people diagnosed with MS may experience a major depressive episode at one point during the course of the disease. Fatigue and cognitive issues, also common symptoms in MS, can increase depression and other mood concerns. This is why recognizing the mental health issues involved and receiving appropriate treatment from mental health providers who also understand the disease is so important.”

MS & Anxiety

MS and anxiety are heavily linked because depression and anxiety often occur in cycles. For some, MS-related loss of functioning leads to a lot of worry, stress and anxiety, especially when they are faced with new challenges as part of the progression of the disease. It can also pose challenges for those without large or reliable care networks. These barriers might lead to creating many back-up plans due to the potential limits of progressing MS.⁴

Figuring out the best treatment plan can also exacerbate anxiety, states Arzt: “Having so many treatment options is definitely an extremely positive newer development for people diagnosed with MS. However, making those choices with the many risk/benefit decisions with a health care provider is still anxiety-provoking, as is the uncertainty of whether the treatments will indeed work for your MS.”

Emotional Strains of MS

In addition to depression and anxiety, there are a lot of emotional concerns that go along with living with MS. Anger and frustration can be experienced in MS patients as a response to their symptoms. The loss of function that MS causes might also cause a person to feel grief and hopelessness.

MS & Anger

Anger aimed at oneself can also be experienced by those who feel frustrated by their own coping strategies. It can feel isolating to live with MS, and even with a plan in place to preserve mental health, it can still be a challenge to find ways to cope that actually help. Some people living with MS may feel their disease is not well understood by the people around them, which can lead to additional frustration. A mental health professional can help people with MS develop effective coping strategies and ways to effectively communicate their feelings with the people around them.⁵

MS & Grief

MS can be tied to feelings of sadness and grief. Sad emotions linked with grief are different from those of depression, which requires a clinical diagnosis. Though there are many symptoms which overlap between clinical depression and grief, it’s important to recognize the sadness and grief that comes along with MS. Grief tends to be the expression of other mental health issues such as depression and anxiety.

Grief is often linked to feelings of hopelessness and loss, both of which are common with MS patients. Given that MS patients are always in a state of flux with their symptoms, grief comes and goes, and concurrently, so do common symptoms with depression. Grief can often be a predictor of depression as well.⁶

Relationship Strains of MS

With the right support and mental health interventions, patients with MS and their partners and families can learn strategies to cope with the relational strains caused by an MS diagnosis. MS can sometimes cause unique challenges in romantic relationships due to the physical and sexual limitations posed by MS.

Arzt points out the need to give time and space to everyone involved in the situation: “MS does not just affect the person who has been diagnosed with the illness. Family and partners all need to adjust to the added “stranger living in the house.” The same adjustment concerns that affect the person living with the illness need to occur for other family members, each in their own time and way.”

MS Relationship Strains on Couples

Couples might struggle to find ways to communicate with one another without invalidating the other’s experiences. Couples may struggle with a new diagnosis or figuring out the best path forward. Couples counseling can be a great way for partners to work through these challenges together. For others, this diagnosis only emphasizes the strong connection between partners.⁷

Strains on Family & Caregivers

MS can also disrupt family structure, communication, and relationships within the family unit. Much like any chronic illness diagnosis, an MS diagnosis is challenging for families. Family members can often feel overwhelming grief as they watch their loved one slowly deteriorate with no ability to support them but to help them manage symptoms.

Families and caregivers often carry the emotional weight of MS, which makes it hard for them to process their own emotions. Families and caregivers can often feel caregiver burnout and guilt for having to attend to their own needs. Living with and caring for a loved one with MS requires a lot of support, patience, and grace, and it’s just as important for families and caregivers to receive support.⁸

Less Common Mood & Behavior Changes for Those With MS

There are some unusual, less common, and intense mood changes that can happen for people with MS. If a person doesn’t know what to expect, these can be surprising or even frightening.

Some uncommon but possible psychological symptoms of MS include:

• Pseudobulbar affect: This symptom includes uncontrollable periods of laughter and crying that may be inappropriate or extreme for the circumstances.
• Euphoria: This is an intense, often unexplainable feeling of extreme happiness or excitement that can come out of nowhere and be incongruent with what’s going on.
• Inappropriate behavior: This is a very rare symptom of MS in which a person loses their inhibition and may act out in inappropriate ways, including sexual or impulsive behaviors.

What May Worsen Mental Health in Those with MS?

Having a history of mental health issues personally or in the family may worsen mental health in those with MS. There are additional risk factors to be aware of which may further negatively impact mental health for those living with MS, including the age of the patient, poor sleep hygiene, substance use, and additional medical diagnoses.

Here are some of the risk factors for worsening mental health for those with MS:⁹

• Older age
• Disability
• Additional chronic illnesses
• Auto-immune diseases
• Fatigue
• Memory loss
• Cognitive functioning
• Sedentary lifestyle/lack of physical activity
• Poor nutrition
• Poor sleep hygiene
• Alcohol and tobacco use
• Family history of disease
• Environmental factors
• Health literacy

Treatments for MS Mental Health Concerns

Therapy can help MS patients, families, and caregivers develop more awareness about the causes and triggers for stress, depression, anxiety, anger, and all other emotions related to the MS diagnosis. By being aware and naming these emotions, we can take ownership of them. This can sometimes help to identify solutions or lifestyle changes that can help reduce these feelings or find better ways to cope.

Medication

When a person with MS is also dealing with depression, anxiety, or other mental health concerns, medication can help. Medication can level out many of the ups and downs that come with mental health challenges, and can also help with energy, appetite and sleep. Talk with your doctor and understand any interactions that could take place with any other medications or treatments before starting a new medication.

Exercise

Exercise has been shown to be an effective way to boost mood, reduce depression, and help manage anxiety. It is recommended that people with MS do regular aerobic exercise as well as resistance training. Someone dealing with MS should talk to their primary care provider about the best type of exercise for them before beginning a new exercise regimen.¹¹

Barriers to Mental Health Care

According to Arzt, there are several barriers that keep people with MS from getting the mental health help that they need:

• Recognition: The first barrier is recognizing that the mental health issues are occurring. Health care providers do not always ask about these symptoms as much as they ask about more physical symptoms, and even when they are recognized, studies have shown that the mental health issues are often undertreated.
• Stigma: Stigma and fear about mental illness can stop people sharing their and their family’s concerns. The person living with MS and family members must feel comfortable talking about it with their healthcare provider.
• Accessibility: The lack of accessible mental health care professionals is perhaps one of the greatest barriers. The accessibility barriers can be geographic distance to appropriate providers, lack of insurance coverage or other financial limitations, lack of disability access within providers’ offices, or finding providers who understand the specific relationship of MS to the mental health issues presented.

Finding the Right Therapist

The best way to find the right therapist for MS-related mental health concerns is by first speaking to your doctors and specialists for any therapists or support groups they are aware of. Many online organizations dedicated to MS research may also have resources. Another way to find a therapist is by searching online and reviewing the in-network providers in your insurance policy.

Looking through online therapist directories and narrowing down a few who have experience with MS or chronic illnesses is important. Many therapists offer a free phone consultation and that can give families an opportunity to evaluate if that may be the right therapist for what they are looking for.

Questions to ask your therapist:

• What is your experience with MS-related mental health issues?
• How might this help my family/partner/caregiver?
• How long will we attend therapy?
• Can we have family and individual sessions as we need?
• How do we know if we’re making progress?
• What should progress feel like?
• What if someone doesn’t want to come to therapy one week?
• Can you see any of us individually?
• Do you diagnose an issue with the family/couple/individual?
• Do you see families/caregivers after the loved one with MS dies?
• Do you communicate with MS patient’s medical teams?

6 Ways to Maintain Mental Health When Living With MS

Maintaining your mental health while living with MS can be difficult, but through the right coping strategies it can be managed. Being kind to yourself and monitoring your symptoms can be helpful ways to maintain your mental health.

Here are six to improve mental and emotional health while coping with MS:

1. Know When You Need Help, & Know Who to Ask

Arzt states, “What is most important is for people to not be afraid to seek assistance if they find themselves having difficulty at any point. It is not a sign of weakness, but rather one of strength to know when you need help finding ways to live your best life with MS. There are many ways that people living with MS can seek to enhance their psychological sense of wellness—social support groups, productive fulfilling activity, exercise, meditation, spiritual practices, or some combination of all of these—but it is equally important to know when you need professional help to decrease your distress from clinical symptoms or when working with a therapist will help you understand and learn new ways to feel better in your life.”

2. Develop a Mindfulness Practice

Mindfulness is simply the act of noticing the present moment without judgment, and can be a great way to manage stress and anxiety. Mindfulness can be practiced formally or informally. Formal practice includes focusing on a specific thing for a specified period of time, like the breath or one of the senses. Informal practice includes remembering to be present and notice your senses as you go throughout the day.

3. Manage Your Stress Levels as Much as You Can

High stress levels contribute not only to more mental health symptoms, but to physical problems as well. Take steps to reduce the stressors in your life. This includes prioritizing self-care, managing commitments, and saying no and setting boundaries as needed.

4. Strategize Problem-Focused Ways to Cope

Problem focused coping skills including changing the things that can be changed. For someone living with MS, this might mean energy management, limiting commitments, making the best choices about healthcare providers or focusing on healthy nutrition.

5. Build & Nurture Caring Relationships

The importance of a good support system can’t be overstated when it comes to living with a chronic illness like MS. Focus on building relationships with people who care for you and are loving and supportive of your challenges and needs, as well as understanding about your limits.

6. Understand & Plan For Your Family’s Needs

There may come times when you are not able to provide as much for your family as you would like, and planning ahead for this can be helpful. This may include things like childcare during your treatment, help around the house on days when symptoms are worse, and even long-term planning if you become disabled or need more help.

Supporting Someone With MS

When someone you care about has been diagnosed with a potentially devastating illness like MS, it can be hard to know what to say or do. The most important thing is to be there for them. Offer to help when you can, but most of all, remember that they are still the person you’ve always known. Don’t forget to reach out in light-hearted and fun ways as well.

Here are some actionable tips for supporting someone with MS:

• Let them know that you are there for them and still want to make plans and have fun together
• Ask how they are doing and if they need to talk
• Offer to go along to an appointment or a treatment
• Help out by providing a meal or doing chores
• Offer to help with errands or even do errands together just for fun
• Don’t minimize their symptoms by saying things like “oh, I’m tired all the time too.” It’s not the same.
• Avoid sharing the latest quick fix or miracle cure. There is no quick fix, if there were your loved one would have discovered it by now. Instead, support them in managing their treatment regimen as prescribed by their providers.
• Do something active with them, like going for a walk when they have the energy
• Send a funny card or meme that reminds you of them

Final Thoughts on MS & Mental Health

MS is a challenging diagnosis that can pose physical and mental health impacts on MS patients and their families and caregivers. What you’re dealing with is unique to you but you are not alone. Your medical team is well equipped to support you and your loved ones through an MS diagnosis and help connect you to therapists and support groups for yourself and your caregivers.