Cover Story: Promoting Mental and Emotional Wellness During Difficult Times
By Susan Wells Courtney, MSAA Senior Writer
Reviewed by Barry A. Hendin, MD
Who could imagine that the lives of so many in our nation could be uprooted so dramatically and for so long, from a pandemic we had never even heard of less than a year ago. And as discussed in our “Up Front” column, we are also facing some significant and heartbreaking challenges, including racial injustice, acts of violence, severe weather, and raging wildfires.
“Feeling anxious? You are not alone. This is a common reaction to an uncommonly stressful time.” This is according to Adam Kaplin, MD, PhD, chief psychiatric consultant to the Johns Hopkins Multiple Sclerosis and Transverse Myelitis Centers, and clinician-researcher in the departments of psychiatry and neurology at Johns Hopkins Hospital in Baltimore, Maryland.
Dr. Kaplin continues, “Compared to the same time last year, we are seeing a 400-percent increase in depression and anxiety among Americans. We are also seeing significant increases in trauma and stressor-related disorder, self-medicating through the use of alcohol or drugs, plus suicidal ideation and attempts.”
Readers should note that depression and anxiety are not limited to just those with multiple sclerosis or other chronic illnesses; this increase in depression, anxiety, and other emotional issues applies to virtually all populations living in our country, and similar mental health problems are being observed around the world.
In this article, we will examine the symptoms of depression and anxiety, as well as other effects of the pandemic, more closely. We will explain which populations are at the greatest risk and how these types of symptoms can affect not only overall health, but notably, the immune system. We will also provide strategies and resources aimed at improving overall mood and wellbeing, and through studies on something called “Purpose in Life,” explain how the mind-body connection can dramatically affect one’s emotional, mental, and physical health.
Dr. Kaplin has a great interest in “Purpose in Life,” or “PIL,” and has published research findings that support its effectiveness for individuals with chronic illness, including MS and Alzheimer’s disease. In addition to the positive effects on one’s mental and emotional health, PIL has also been shown to significantly support the central nervous system, cardiovascular health, and even the immune system – reducing inflammation and calming overactive immune-system activity. More information is provided on this exciting research appearing later in this cover story.
MSAA’s Winter/Spring 2020 issue of The Motivator featured the cover story, “Coping with the Emotional, Physical, and Mental Effects of a Pandemic.” However, due to the start of the pandemic, this particular issue of our magazine was not printed. It was only available on our website in digital formats.
“Coping with the Emotional, Physical, and Mental Effects of a Pandemic” gave important details on COVID-19 and pandemics, how to limit exposure, common reactions to (and strategies to cope with) disease outbreaks and social isolation, additional wellness information, children’s responses to the pandemic, plus a collection of helpful resources and articles. If you have not seen this issue and would like to read the entire cover story or any of the other sections, please visit mymsaa.org/motws20.
Additionally, MSAA provides a wealth of information on symptoms and symptom management on our website at mymsaa.org/symptoms. Much of the information on depression and anxiety from our website has been summarized for this article. This information was originally written by Miriam Franco, PsyD MSCS, who has been an esteemed member of MSAA’s Healthcare Advisory Council for many years. Dr. Franco is a psychotherapist and psychoanalyst who specializes in helping individuals cope with chronic illness and has a private practice in the Philadelphia area. Dr. Franco’s observations on the pandemic and its effects on the MS community are provided in a sidebar on page 19.
Our hope is to accomplish three objectives with this article. Our first objective is to explain the different types and symptoms of both depression and anxiety, so individuals may recognize if they or a loved one may be suffering from a form of one or both disorders. Our second objective is to provide emergency contacts, resources, and strategies for mental and emotional wellness. And finally, we hope that by raising awareness, those experiencing such symptoms will consult with their family doctor, neurologist, or mental-health professional for both a diagnosis and a treatment plan – one which may involve talk therapy, medication, and/or changes in lifestyle.
Depression in MS and Types of Depression
Researchers believe that the high rate of major depressive disorder, dysthymia (a chronic type of depression), and bipolar disorder with MS, is a result of the disease process or the etiology of the disease itself. In other words, the damage to the nerves within certain areas of the brain is believed to increase the chance of greater depressive reactions. Depressive reactions are not to be confused with sadness or fatigue.
Sadness is a feeling in response to disappointments and losses; it is experienced directly in relation to one of these triggers. Experiencing sadness helps us to mourn and move through an experience of pain or loss. It typically does not last long, and once expressed, is relieved.
Fatigue, the most common symptom of MS, occurs in response to having the disease and is greater at certain times of the day. It may not be eliminated, but can be reduced by periods of rest and appropriate planning and pacing of your activities.
A depressive mood typically lasts longer and is not associated with one trigger alone. Moods, by definition, have strong intensity and long duration. Shifting or distracting yourself from your mood is difficult.
Major Depressive Disorder
With this most-common type of depression, you can have one major episode or experience recurring episodes over time. To be considered to have major depressive disorder, you typically experience a depressed mood most of the day, nearly every day, and you would also have some or all of the following symptoms:
- have a loss of pleasure in most if not all activities that usually give you pleasure
- experience a significant change in weight (loss or gain)
- either have difficulty falling asleep or sleeping too much
- feel a loss of energy and motivation
- likely have feelings of worthlessness, low self-esteem, or major guilt
- have difficulty concentrating or making decisions
Additionally, you may:
- have recurrent thoughts of harming yourself, possibly have thoughts of suicide
- lose interest in keeping up your appearance
- have aches and pains that physicians can’t explain
- have mood lability, which means you can cry or become angry easily over things that typically would not draw that kind of reaction from you
This type of depression is very similar to major depression, except that the symptoms may not be as severe and you may not experience as many of them. The key feature to dysthymia is that it is felt to be a chronic mood, something you have had for at least two years. This form of depression is not episodic; it’s not characterized by a sudden episode or outburst. Rather, it is more like a slow malaise that starts to be associated with your normal mood. Dysthymia is typically experienced with long-standing insomnia, poor appetite or overeating, poor concentration, and poor self-esteem.
Bipolar Disorder (or Manic Depressive Disorder)
This type of disorder is highly genetic in that it often runs in families and is sometimes referred to as manic depressive disorder. You can have a mild or more severe form. If you have a sibling, parent, or close relative who has been diagnosed with this disorder, and you are experiencing any signs of depression, it is a good idea to have this checked by a mental-health professional. With this disorder, episodes of low mood and depression are interspersed with periods of euphoria or heightened activity and agitation. You must have at least a single episode of mania or heightened activity, agitation, and euphoria, to warrant this diagnosis.
Assessing the Symptoms of Depression
In all types of depression, activities of daily living can feel overwhelming and there is a tendency to believe you will never change. Several symptoms of depression are common ones of MS, such as fatigue, trouble sleeping, cognitive difficulties – especially being unable to focus and concentrate – and feeling slowed down. These similarities can, however, be distinguished by a mental-health specialist who has experience with MS, such as a social worker, psychologist, or psychiatrist, who is specialized or certified in this area.
Women are not only more likely to have MS, but they are also more likely to experience depression. It is not known if this is attributable to hormonal factors and fluctuations caused by pregnancy, menopause, and/or menstrual changes. Additionally, women tend to have multiple care-related responsibilities, are under major stress, and are constantly multi-tasking. While women may be more inclined to seek help, men are more likely to self-medicate with drugs and alcohol, as well as take prescribed antidepressants.
Often, depression may present itself first with some men as increased irritability. And those who have been vulnerable to depression prior to having MS will likely have a higher risk for depression during the course of MS. Other risk factors include a lack of or low social support and isolation, substance dependency and abuse, or presence of another medical condition.
Specific Effects of Depression on Quality of Life (QOL)
Depression is Still Highly Untreated in MS
In one study of people with MS who experienced thoughts of suicide, one-third had not received any psychological help, and two-thirds had not received any anti-depressant medication. This may be largely due to the fact that such problems are not always communicated to the doctor.
Given the wide range of physical symptoms experienced by individuals with MS, physicians tend to spend most of the limited appointment time on the physical course of the disease. Often the patient with MS is the one to bring up the issue of emotional disturbances or mood in order to have them addressed. People with MS, their care partners, and their physicians, all need to be aware of these symptoms that can arise with MS, and be sure to inquire about any emotional issues that could be present.
Untreated high rates of depression and anxiety increase suicide risk in MS. Also, severe depression, abuse of alcohol, and social isolation (living alone) can increase the risk of suicide as well. Anyone experiencing these types of thoughts, or care partners who might suspect this of their loved one with MS, should immediately contact their physician, therapist, or the National Suicide Prevention Lifeline. Trained counselors are available 24 hours per day, seven days per week, at (800) 273-TALK (8255).
Strained Family Relationships
For family members, understanding the physical symptoms of MS is often easier than understanding the emotional ones. When depressed, becoming passive, exhibiting a negative mood, and experiencing low motivation are common; some may even withdraw from others. This may irritate family members, causing them to be critical or expecting you to do one thing that will snap you out of your mood. They may feel at a loss encountering your helpless mood.
If you become withdrawn, family members may withdraw too, as they may not fully understand what is needed. A loss of sexual interest or libido is also common and this too can have a negative impact on couples. Depression is not overcome by the power of positive thinking. Family members should avoid giving advice. Instead, a referral to a skilled mental-health professional can be of great benefit, ideally someone who specializes in MS, can work with both the individual and/or family, and can prescribe a specific antidepressant medication if needed.
Coping with Depression
Depression is treatable and needs the time and attention it deserves, like any other condition. Expecting someone to “just get over it” or “just put up with it” won’t help. Many become depressed following the diagnosis of MS because time is needed to adjust to what the diagnosis means, as well as any potential losses in one’s quality of life that may be anticipated.
Individuals who do not cope well, whose coping skills are highly emotionally centered and involve reacting by escape or avoidance, may experience a worsening of their depression. It is natural to be upset and struggle with the uncertainty and loss that surrounds the course of living with MS, yet constructive problem-solving and psychological counseling can be extremely beneficial. Getting help with focusing on what you can control, and learning to respond – not just react – to your experience, will help over time.
Participating in psychological therapy and taking a medication for depression appear to be the most effective means of treating depression. Treating depression with a medication or a drug alone does not address the underlying causes. This is because communicating and sharing your experiences with others and with a mental-health professional has been shown to improve one’s ability to cope and to continue to find meaning in one’s life. Consistent exercise has also been shown to improve depression.
Many types of psychotherapies may be effective in treating depressive disorders. These include cognitive behavioral therapy (CBT), psychotherapy, problem-focused supportive-group therapy, and telephone-administered CBT for individuals with MS who experience significant levels of depression.
For treatment with medications, consulting a psychiatrist, if possible, may be of greater benefit. Many managed-care and insurance plans have psychiatrists available for medication management. Your therapist can also aid you in this referral process. Consulting a psychiatrist is important because general practitioners (GPs) or family physicians may not be as familiar with the range of antidepressant medications available, versus someone who specializes in this field.
Medications That Can Trigger Depressive Responses
Steroid use is known to induce depressive reactions or exacerbate bipolar reactions in individuals. Additional medications, such as those used to treat urinary incontinence or spasticity, can also affect mood. If you are taking one or more of these medications, check with your physician to see if they in any way could be lowering your mood.
Anxiety in MS: Frequently Overlooked and Undetected
Anxiety is perhaps the most taxing and under-treated psychological effect of living with MS. It does not appear to result from the physical disease process of MS, but rather stems from the realities of living with MS. Individuals living with MS know that it’s the unpredictability, and therefore the difficulty, in planning and preparing for the effects of MS on your life, that drives one’s anxiety. Anxiety disorders are estimated to affect 43 percent of those with MS, and are also more common among women.
The scientific literature suggests that anxiety levels are higher at the onset of the disease and when it co-exists with moderate to severe depression. Tragically, the combination of untreated, sustained depression along with anxiety can produce higher rates of suicide among people with MS. Limited social support and higher rates of alcohol consumption also elevate anxiety disorders in MS.
Anxiety disorders are frequently overlooked and often undetected. As a result, they can worsen one’s quality of life and greatly reduce treatment adherence. Research suggests that approximately half of those with MS who have a diagnosable anxiety disorder are not receiving an anti-anxiety medication and/or psychotherapy. This is important to consider, because if an anxiety disorder co-exists with a depressive disorder, adequate treatment may require higher doses of an antidepressant medication for a longer period of time. This is something that many healthcare professionals may not be implementing if they are not well-versed in this area of treatment.
The Symptoms of Anxiety
The spectrum of anxiety disorders includes panic attacks, phobias, obsessive-compulsive disorder (OCD), and generalized anxiety disorder (GAD). GAD is more prevalent in MS, followed by panic disorder and OCD. Those at higher risk are women, particularly those with a prior history of depression, excess drinking, and the presence of high social stressors. To be considered to have an anxiety disorder, a patient would present physiological and/or psychological symptoms.
Examples of physiological symptoms:
- Increased heart rate or heart palpitations
- Dry mouth
- Shortness of breath
- Hot or cold sensations
- Tingling in fingers or toes
- Muscular tension
- Insomnia, specifically difficulty falling asleep
- Frequent urination
Examples of psychological symptoms:
- Chronic unhappiness
- Worry, guilt, or feeling out of control
- Feelings of inadequacy, feeling criticized, or easily embarrassed
- Rigidity, which is to be inflexible and less willing to make changes
- Hostility, feeling anger toward others
- Repeating certain behaviors or ruminative thoughts (pondering something repeatedly)
- Over-anticipating things
- Excessive concern with physical health
- Negative thinking about the future
- Racing thoughts
Lowering anxiety requires many steps that include learning stress-reduction techniques. These techniques include:
- Interrupting and changing both “all or nothing” types of thinking, as well as catastrophic thinking, where an individual dwells on the worst possible outcomes
- Incorporating exercise into lifestyle
- Breaking down fearful concerns into manageable, “present-oriented” solutions, aimed at resolving the issues at hand
- Problem-solving one step at a time
- Allowing and normalizing feelings of loss of control, while allowing the effect of any losses to be grieved and expressed
Learning to control your reactions and quiet yourself can allow you to feel anxiety when needed to problem-solve, but not to become so overwhelmed by it. Increasing the areas of where you can have control and prioritizing activities can also help. Developing a more spiritual, entrusting attitude has also been found to be helpful to many.
Psychotherapy, either psychodynamic or cognitive/behavioral, includes stress-reduction techniques such as guided imagery, biofeedback (a technique that teaches individuals how to control their body’s responses), and meditation. These can be very helpful to reduce anxiety. Medication management is also available.
Dr. Kaplin notes, “Surprisingly, during this pandemic, people under 25 are at the greatest risk for worsening anxiety. Many are stuck living with older family members versus being out on their own, possibly attending college or starting their careers, and enjoying their independence.
“Another high-risk group are the healthcare professionals who work at the hospitals. They care for patients with COVID-19 every day – some of whom never recover – and often don’t seek help for themselves if and when they need it.”
Dr. Kaplin adds that mindfulness can be helpful to reduce symptoms of depression and anxiety. He explains, “Mindfulness gives people the opportunity to take a break, to ‘check out’ from the stressors, and then ‘check in’ with themselves. It’s particularly useful when life is too busy.”
For more information on mindfulness, please see MSAA’s archived webinar, “Keeping it Simple: Everyday Mindfulness for People Living with MS.”
Purpose in Life and its Impact on Mental and Physical Health
What is Purpose in Life?
“New Movement in Neuroscience: A Purpose-Driven Life,” published in the May-June 2015 issue of Cerebrum, is an informative and thought-provoking article co-authored by Adam Kaplin, MD, PhD and Laura Anzaldi. In this writing, the concept of “Purpose in Life” is explored and study data are provided to support its many proposed health benefits.
The Editor’s Note from this article explains, “Purpose in Life (PIL) is a research area that focuses on the interactions between mind and body and the powerful ways in which emotional, mental, social, and spiritual factors can directly affect health. It links the belief that your life has meaning and purpose to a robust and persistently improved physiological health outcome.”
PIL was first introduced to psychiatry in the 1940s by the Jewish physician, Viktor Frankl, who was trained in both psychiatry and neurology. He was practicing in Austria during World War II, and survived three years in different concentration camps, including Auschwitz. According to Frankl, “Man’s main concern is not to gain pleasure or to avoid pain but rather to see a meaning in his life. That is why man is even ready to suffer, on the condition, to be sure, that his suffering has meaning.”
In 1964, researchers James Crumbaugh and Leonard Maholick created a twenty-question scale to measure PIL. This was in response to those who challenged the ability to assess PIL and the validity of those studies. According to Kaplin and Anzaldi’s article, “Other researchers have sought to characterize the nuances of PIL. The general consensus is that PIL includes dimensions such as (1) believing that life has meaning or purpose, (2) upholding a personal value system, and (3) having the motivation and ability to achieve future goals and overcome future challenges.”
What are the Potential Health Benefits Related to Purpose in Life?
In terms of cognitive decline and dementia – which encompasses difficulties with memory, cognition, and communication – Purpose in Life (PIL) appears to have significant effects in delaying and possibly preventing these types of disorders. According to work done by Patricia Boyle and colleagues at the Rush Alzheimer’s Disease Center, PIL may be neuroprotective, helping to protect the nerves of the brain.
Looking at more than 900 seniors who were at risk for dementia and following them for seven years, the investigators found that those with high PIL were 50% less likely to develop Alzheimer’s disease and 30% less likely to experience mild cognitive impairment. Even those without Alzheimer’s disease showed a slowing of age-related cognitive decline.
In terms of cardiovascular benefits, higher levels of PIL have been shown to reduce the risk of stroke and heart attacks. In a study that followed a group of men for 13 years, investigators found a 72% lower rate of death from stroke, a 44% lower rate of death from cardiovascular disease, and a 48% lower rate of death from any cause, among those with a strong sense of purpose.
With regard to inflammation, Kaplin and Anzaldi explain how inflammation is a factor in the development and worsening of central nervous system (CNS) disorders, which include MS, as well as neurodegenerative diseases, such as Alzheimer’s and Parkinson’s diseases. Inflammation in certain areas of the brain can also cause cognitive impairment and depression. While the body’s immune system produces inflammation to fight infection and heal injuries, when it becomes overly active, it can damage tissues and cause disease. Psychosocial stress can also contribute to inappropriate immune system activity.
PIL may have a calming effect on immune system activity. For example, blood tests show lower levels of the pro-inflammatory cytokine interleukin-6 (IL-6) for individuals with higher PIL scores. Interestingly, researchers have found that those who sought to experience happiness for immediate gratification – without a long-term purpose – actually had higher amounts of pro-inflammatory genes compared with those who were striving for a purpose. Given these findings, the authors conclude, “This correlation implies that seeking purpose helps avoid a pro-inflammatory state, a positive step in fighting neurological diseases.”
How Purpose in Life May Impact Depression
In Crumbaugh and Maholick’s original paper, they noted that the patients they studied who were significantly depressed exhibited a “clearly observable loss of life purpose and meaning,” than those who were not depressed. However, they also commented, “It may be difficult to untangle whether depression decreases PIL or low PIL leads to depression.”
Additionally, Kaplin and Anzaldi “drew some parallels between meaningfulness and peaceful feelings that religion can bring.” They stated, “Many people experiencing a tragedy or crisis turn to faith to find comfort, support, and answers. It is possible to endure almost anything as long as we can identify a greater purpose, and for some, religious doctrines and beliefs provide reasons and reassurances for suffering.” However, they also note that “how clearly and confidently an individual holds to their self-concepts of the world and their place in it” determines the degree of PIL, indicating to the authors that while having some similarities, “PIL and religion are separate and independent phenomena.”
In summary, Kaplin and Anzaldi state, “Identifying a purpose to life can have profound implications in overall life satisfaction and health, as it motivates and drives us even in the face of difficulties and hardships. PIL appears to be biologically wired into our thinking and necessary for optimal health.”
National Suicide Prevention Lifeline
English: (800) 273-TALK (8255)
Español: (888) 628-9454
TTY: Dial 711 then (800) 273-TALK (8255)
Substance Abuse and Mental Health Services Administration (SAMHSA) Disaster Distress Helpline: (800) 985-5990
This helpline provides free and immediate counseling to anyone in need of help coping mentally or emotionally with the pandemic
or any current crisis or disaster.
SAMHSA National Helpline
(800) 662-HELP (4357)