Multiple Sclerosis (MS) is a complex disease that can have a negative impact on mental health. Some of the most common psychological impacts include increased sadness, feelings of grief associated with loss of control, anger, anxiety, depression and overall stress. It’s important to address these feelings and symptoms in a treatment plan.
MS & Mental Health
MS is a disease that can impact someone’s quality of life. MS 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. Individuals 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
According to Andrea Arzt, LCSW, MSCS, Director of Healthcare Provider Engagement for the National Multiple Sclerosis Society, “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.”10
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
Connection Between MS & Depression
MS may cause many physical, psychological and emotional changes that impact one’s overall physical and mental functioning as well as overall quality of life. As a result, MS patients may be prone to depression and suicidality. Depression is a major determinant of quality of life. 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 one 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.”
Connection Between MS & Anxiety
Similarly to the connection between MS and depression, MS and anxiety are heavily linked because depression and anxiety often occur in cycles. For some, MS-related loss of functioning and ability leads to a lot of worry, stress and anxiety, especially if one living with MS is faced with new challenges.
It can also pose challenges for those without large or reliable networks to help support those with an MS diagnosis. These barriers might lead to creating many back-up plans due to the the potential limits of progressing MS. As a result, anxiety tends to be a major predictor of depression, especially with the MS patient population.4
Figuring out the best treatment plan can also lead to 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 MS 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 individuals 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 than 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. Similarly to anxiety, grief is often a predictor of depression as well.6
Relationship Strains of MS
With the right support and mental health interventions, patients with MS and their spouses 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.”
Couples
Couples might struggle to find ways to communicate with one another without invalidating the other’s experiences. Married 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
Family & Caregivers
In families, 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 often can feel overwhelming grief as they watch their loved one slowly deteriorate with no ability to support them but 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
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: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
Treating Anxiety & Depression Along With MS
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.
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 a 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 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?
9 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.
Ways to improve mental and emotional health while coping with MS include:
- Educate yourself on MS and find helpful resources for yourself and family members (ie the National MS Society) —the more information you have, the better
- Have grace with yourself as MS symptoms are inconsistent and unpredictable
- Always log all your MS symptoms, treatment and reactions
- Find a medical team and system you’re comfortable with
- Try yoga, meditation, acupuncture, reiki, and any other holistic treatment that you are physically and emotionally able to participate in
- Don’t over exert yourself
- Develop a support system of friends, family, neighbors and other loved ones
- Consider individual or family therapy
- Locate a support group for MS patients
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.”
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.
