Depression
Depression is common in multiple sclerosis, and in addition to any possible depression that results from coping with a chronic illness, depression in multiple sclerosis may be caused by damage to the nerves within certain areas of the brain. Major depressive disorder is the most-common type of depression experienced, and with this form of depression, individuals feel depressed much of the time – affecting one’s sleep, appetite, motivation, ability to concentrate, interest in activities, and more.
In all types of depression, activities of daily living can feel overwhelming and there is a tendency to believe this will never change. While depression in multiple sclerosis is often underdiagnosed and undertreated, a mental-health specialist who has experience with chronic disease should be consulted if a person with multiple sclerosis may be experiencing symptoms of depression. Participating in psychological therapy and taking antidepressant medication appear to be the most effective means of treating depression in multiple sclerosis.
Depression Versus Sadness and Fatigue
Researchers believe that the high rate of major depressive disorder, dysthymia (a chronic type of depression), and bipolar disorder with multiple sclerosis, 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 multiple sclerosis, 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.
Types of Depression
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 or ending your own life
- 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
Dysthymia
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 multiple sclerosis, 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 chronic disease, such as a social worker, psychologist, or psychiatrist, who is specialized or certified in a related area.
Your multiple sclerosis neurologist or nurse can use many common tools to first assess the presence of symptoms of depression. Having these screening tools on hand can help facilitate a referral to an appropriate mental-health specialist. To follow are common screening tools or questionnaires that can be quickly and easily completed at a multiple sclerosis center, a neurologist’s office, or by a mental-health professional for depression. They each require just a few minutes to complete – the latter two require only one or two minutes – and all can point to the presence of depressive symptoms:
- The Beck Depression Inventory (BDI)
- The Patient Health Questionnaire (PHQ-9)
- The Two Question Screen (2QS)
- The Quick Screen 20 (QS-20)
Depression Rates Differ Between the Sexes
Women are not only more likely to have multiple sclerosis, 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 multiple sclerosis will likely have a higher risk for depression during the course of multiple sclerosis. Other risk factors include a lack of or low social support and isolation, substance dependency and abuse, or presence of another medical condition.
More Awareness and Treatment are Needed
In one study of people with multiple sclerosis 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 multiple sclerosis, physicians tend to spend most of the limited appointment time on the physical course of the disease. Often the patient with multiple sclerosis is the one to bring up the issue of emotional disturbances or mood in order to have them addressed. People with multiple sclerosis, their care partners, and their physicians, all need to be aware of these symptoms that can arise with multiple sclerosis, and be sure to inquire about any emotional issues that could be present.
Patients need to be prepared and proactive; don’t wait for your doctor to ask you about emotional problems. Knowing what is available through your insurance plan in advance is helpful. By calling the mental-health or behavioral-health phone number on the back of your insurance card, you may be able to find out if there are social workers or psychologists in your plan who specialize in multiple sclerosis care or other chronic conditions. Or, ask your nurse or physician to refer you to a mental-health professional with this type of specialty.
If you do not have health insurance or your insurance plan does not cover behavioral-health services, you can still access and receive assistance for emotional challenges. In many communities, behavioral-health centers and other clinicians are available that provide a sliding-scale fee structure or sometimes free care to individuals with a low household income and/or no insurance coverage. To locate a clinic or provider in your area, please call the SAMHSA National Helpline at (800) 662-HELP (4357). Be sure to indicate you are looking for a program that provides payment assistance or operates on a sliding scale. (SAMHSA is the Substance Abuse and Mental Health Services Administration.)
Please note that according to its website at samhsa.gov, SAMHSA’s National Helpline is a confidential and free information service for individuals and family members facing mental and/or substance use disorders. This service provides referrals to local treatment facilities, support groups, and community-based organizations. SAMHSA’s National Helpline is open 24 hours a day, seven days a week, with information available in English and Spanish.
988 Suicide & Crisis Lifeline
Untreated high rates of depression and anxiety increase suicide risk in multiple sclerosis. 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 multiple sclerosis, should immediately contact their physician, therapist, or the 988 Suicide & Crisis Lifeline.
According to its website at 988lifeline.org, the 988 Suicide & Crisis Lifeline is a national network of local crisis centers that provides free and confidential emotional support to people in suicidal crisis or emotional distress 24 hours a day, seven days a week in the United States. This new, shorter “988” phone number is now active nationwide and is easier for people to remember and access mental health crisis services. When people call, text, or chat 988, they will be connected to trained counselors who will listen, provide support, and connect them to resources if necessary.
For families with children preparing for or attending college, Community for Accredited Online Schools offers a helpful publication, Parents’ Guide to Suicide Prevention in College. It describes warning signs, offers strategies, and provides useful resources.
Strained Family Relationships
For family members, understanding the physical symptoms of multiple sclerosis 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 who can work with both the individual and/or family is needed, as well as an evaluation with a psychiatrist to see if specific antidepressant medication would be helpful.
Social Withdrawal and Job Strain/Loss
Since individuals with depression experience greater fatigue, withdrawing to try to preserve energy is natural. This can result in not taking your medication or forgetting to do so, not having the energy to exercise, and less energy to put into relationships and work. A good plan is to focus on a few tasks to accomplish each day to conserve energy, instead of trying to cover all of them. Taking the steps needed to engage social supports and resources is far more difficult when depressed, so having these supports and resources in place beforehand is another vital strategy.
If you know you are subject to depression, you may be able to predict times or events when you are more vulnerable to emotional issues, so family members and friends can be more available at these times. For some, this may be during the holidays or during the long winter months with fewer hours of sunlight. Let family and friends know that if they don’t hear from you during these times, that you would like them to contact you. Explain that this is because of your low energy, mood, or motivation, and that you are not trying to be unsocial.
Most people with mild-to-moderate depression can continue to work, but major depression can lead to a loss of employment. If your depression is interfering with your productivity and attitude at work, you may want to consider the pros and cons of alerting your employer if you are being treated for major depression, noting that you are taking medication and seeing a specialist. This is usually preferable to simply becoming absent from work, although you will need to make the decision of whether or not you want to disclose your depression and treatment, and what the ramifications may be. Many can gain relief from severe symptoms in three to four weeks with proper medication and psychotherapy interventions.
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 multiple sclerosis 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 well 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 multiple sclerosis, 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.
Treatment Options
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.
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 multiple sclerosis 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.
For instance, many GPs will typically prescribe the more common SSRIs (selective serotonin reuptake inhibitors), such as Zoloft® (sertraline), for most people. However, this may not be the best choice for everyone. If you experience more agitated depressions, such as increased anxiety with depression, you may be in need of antidepressants that also work to reduce your agitation – not just your low mood. If you are concerned about lowered sexual libido, certain classes of antidepressants, such as Wellbutrin® (bupropion), tend to not lower libido. If you have bipolar disorder, you may well need two different types of antidepressants to help regulate your low moods and this requires an experienced psychiatrist. This type of specialist is also skilled at optimal dosing over time. Please note that many antidepressants may require several weeks before you experience their full benefit, and some require regular blood work.
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 can lower mood.
Updated in July 2023 by Dr. Barry Hendin, MSAA Chief Medical Officer
Original content by Dr. Miriam Franco MSW, PsyD, MSCS