The stress that comes with living with chronic illnesses such as multiple sclerosis (MS) can frequently bring about emotional changes. These changes may begin from the moment of diagnosis and continue throughout the progression of the illness. Emotional changes vary from person to person and may include increases in anxiety, irritability, emotional outbursts, or feelings of hopelessness.
Because the physical effects of MS can be severe, the condition’s psychological impacts are sometimes overlooked. However, these impacts are important to identify as they occur, and establishing methods to manage them can help improve your quality of life.
“Accepting that you are depressed can be the first step to recovery, as ultimately you own your own mind and can either control it, or let it run wild and control you,” recommended one MyMSTeam member. “Talk to your doctor.”
Stressful experiences related to life with MS can lead to emotions presenting themselves in unusual or unexpected ways. These emotional changes can range from mild to severe, such as a general disinterest in activities that used to be pleasurable or developing more impactful psychological conditions.
Depression is the most frequently reported symptom among people living with MS, occuring in nearly 50 percent of people with the condition. Symptoms of depression may include:
If these feelings persist for at least two weeks, you may be experiencing clinical depression.
There are many ways to seek help if you are experiencing clinical depression, including psychotherapy or treatment with an antidepressant. One or both may significantly help. Your neurologist can help you manage symptoms of depression or point you to another specialist.
“Antidepression meds helped me a ton,” wrote one MyMSTeam member. “[Our] myelin is shot, our nerves are literally exposed!”
Extreme changes in mood, or mood swings, are common in people living with MS. Mood swings refer to periods of unusually intense emotions, which can include extreme levels of happiness, irritability, or sadness — as well as feeling unable to complete simple tasks. In some people, these intense emotions may be related to bipolar disorder (formerly known as manic-depressive disorder). According to the National Multiple Sclerosis Society, bipolar disorder occurs in 13 percent of people with MS. The national average is between 1 percent and 5 percent.
We all experience feelings of anxiety from time to time, but those feelings can be especially intense for people with MS. In some cases, people with the condition may develop an anxiety disorder, such as social anxiety or panic disorders. These disorders occur in nearly 36 percent of people with MS, higher than the national average of 29 percent.
Symptoms of anxiety disorders include bouts of anxiety, panic, or fear, which are more intense and last longer than what the general population experiences. People with anxiety disorders may also experience high levels of irritability and difficulty concentrating.
In rare cases, a person with MS may develop pseudobulbar affect (PBA), which can cause involuntary emotional outbursts. This condition occurs when MS affects the limbic and paralimbic systems of the brain, which are thought to control emotional expression. Examples of such outbursts include uncontrollable laughing at a socially inappropriate situation or sudden uncontrollable crying without a direct trigger. PBA occurs in 7 percent to 10 percent of people with MS. In 2010, the Food and Drug Administration approved a drug called Nuedexta (Dextromethorphan/Quinidine), specifically for the treatment of PBA in MS.
People with MS who experience intense emotional changes can have trouble sleeping or maintaining their physical health through proper diet and exercise. Emotional changes may also impact their relationships, social life, and work. Often, these effects are cyclical in nature and contribute to each other.
Sleep disturbances are very common in people with chronic illnesses, including MS, due to the stress that can come with emotional changes. In general, people with MS get less quality sleep than the general population. Moreover, a 2017 study found that 95 percent of people with MS were affected by fatigue.
Feelings of depression, guilt, or worthlessness can lead people with MS to avoid getting the recommended amount of exercise for supporting their general well-being. Insufficient exercise can contribute to fatigue, physical weakness, and weight gain.
Emotional changes from MS may hinder people from opening up to loved ones about how the condition affects them. Feelings of hopelessness, anxiety, guilt, or a loss of interest in activities may also cause individuals with MS to avoid spending time with friends and family. Furthermore, emotional changes may lead to intimacy issues — both physical and emotional. In general, people experiencing strong emotions from MS may lack the energy or drive necessary to develop and maintain relationships, leading to disengagement or feelings of loneliness.
MS can hinder a person’s ability to work. A study from 2018 showed that high levels of self-reported fatigue correspond with a decrease in the amount of hours worked and general work capacity. Stress in response to an MS diagnosis or a relapse with new lesions can produce feelings of worthlessness and an inability to thrive in work settings. These feelings may drive some people to want to leave their jobs entirely.
Many aspects of MS can cause emotional changes.
The inherently debilitating nature of MS can bring about high levels of stress. Stress is a risk factor for developing various emotional changes, and in some cases, mental-health disorders.
Some common treatments for MS have side effects including emotional changes, or physiological changes that can bring about emotional changes.
Other health conditions that occur alongside MS can exacerbate emotional and physical symptoms of MS. Some of these conditions include:
A certain amount of grief is a natural and expected reaction to changes that may occur in one's life because of MS. However, prolonged grief over one’s diagnosis, during periods of exacerbation, or in response to worsening disability, can lead to changes in mood, such as intense feelings of sadness or despair.
Emotional changes can be painful, and many times, difficult to manage. Thankfully, there are many healthy ways to manage these changes and to find help when experiencing emotions at high levels.
Cognitive behavioral therapy (CBT) is a form of talk therapy and is commonly regarded as a powerful tool for learning how to better manage stressful life situations. CBT can be an especially helpful tool for those dealing with symptoms of depression. A 2020 study showed that people with MS undergoing CBT had high satisfaction rates and showed improvement in both depression and pain severity. Other types of therapy have also proven effective for managing emotional changes in people with MS.
Reaching out to people within your social support groups, including friends, family members, or others with MS, can be very helpful for managing stress and emotional changes. A 2017 study showed that connecting with social support greatly increased coping behavior and abilities of people with MS.
Meditation is a well-known, helpful mechanism for managing stress. Medical professionals recommend people with MS use deep-breathing techniques and meditation to manage emotional changes.
MyMSTeam members have shared advice on other strategies for coping with depression. “Do something different, anything: a walk, reading, anything,” one member recommended. “It's true that a person often cannot simply think herself out of depression, but doing something different can often break the cycle of negative thoughts that cause depression. Physical activity is good, since then you're more in your body than in your mind.”
Managing emotional changes can be difficult, but you do not have to do it alone. There are several resources available to help you, including online forums where you can discuss your symptoms with others experiencing the same thing.
Through MyMSTeam, you can join an online social network for those living with multiple sclerosis. In doing so, you will gain access to a social support group with more than 162,000 members, all of whom are facing similar challenges and understand what you are going through.
Are you experiencing emotional changes from MS? How are you managing them? Share your ideas in the comments below, or start a new conversation at MyMSTeam.