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The Complexities of Stress in MS: An Interview with Elissa Berlinger, LCSW

Elissa Berlinger is a Licensed Clinical Social Worker and MS Educator. She has been involved with the Rocky Mountain MS Center since 2010, after being diagnosed with MS. She received her Master of Social Work from Smith College School for Social Work and she completed a clinical fellowship at the University of Colorado Boulder. Through her role with the Rocky Mountain MS Center, she teaches MS 101 with Kelsey Morrow and provides therapeutic support for individuals, families, and loved ones who have been impacted by MS for the Rocky Mountain MS Center. She is in private practice in Denver.

We recently spoke with Elissa about the challenges of stress and living with MS.

InforMS: Why is it so important that someone living with MS is aware of their stress? How does it impact them?

Elissa: The brain pays for stress first. Stress puts your body into a fight or flight response that is governed by the release of stress hormones and can interfere with the normal workings of so many bodily processes like breathing, digesting, sleeping, immune system regulation, and more. It can impair cognitive functions such as decision making, problem solving, and attention. It can increase emotional responses making someone more susceptible to experiencing anxiety, depression, and other mental health concerns. Many of these symptoms are already an issue for people living with MS, and stress can intensify these symptoms. People may also experience a delayed stress response. They may make it through the stressful situation and feel okay. However, a few days or weeks later the stress of that situation may manifest, and they can experience the concerns that are described above.

InforMS: What are some common stressors that individuals living with multiple sclerosis often face, and how can these stressors impact their overall health and well-being?

Elissa: The stressors that individuals living with MS often face are multifaceted and yet there are some common stressors that individuals often encounter. One major stressor is dealing with the limitations and/or disability that comes with the various symptoms that one experiences. Fatigue, pain and balance or walking concerns often cause a great deal of stress. And when someone is more fatigued or having difficulty doing what they want to do, this can cause mood disruptions such as irritability, anxiety, anger, and sadness.

When someone is stressed, it can sometimes be difficult to fully recognize how their stress is impacting their mood and their ability to communicate with support partners in a clear and effective way. When this happens, it can compound their stress and it can also increase their MS symptoms. Stress can impact their sleep and appetite, which may impact their mood, fatigue, and overall functioning and can cause more stress. It is kind of like “which comes first-the chicken or the egg” except that it is all interconnected and can be a vicious cycle.

InforMS: Many individuals with MS experience mood changes and depression, which can be worsened by stress. How can these emotional aspects be addressed as part of a comprehensive stress management plan?

Elissa: Feeling your feelings is important. Recognize, name, and validate your feelings. Then you can decide how to move through them. It can help to talk about your feelings out loud with a support partner or professional. Name your feelings in the third person. Instead of saying “I am angry,” try “I am feeling some anger” and explore where the feelings are originating from and how they physically feel.

Recognizing that stress is a part of life is fundamental. There is not going to be a time when we don’t feel some sort of stress. The body isn’t able to distinguish good stressors like weddings, new kids, new jobs, versus other stressors, such as uncertainty with the future, financial stress, work stress, or familial stress. In this same vein, there are also internal stressors, like our own anxieties, needs to be perfect, feeling uncomfortable or uncertain, and external stressors such as other people’s actions and behaviors, what may happen in the future, or the state of the world.

It is also important to remember that thoughts are just thoughts and feelings are just feelings. Both will pass and they will change over time. It is helpful to not over-identify with both thoughts and feelings. When we are feeling fatigued, pain, or experiencing other limitations from MS, it can be challenging to remember that tomorrow will be a different day. At times it can feel like this is how it is always going to be and this can cause a great deal of stress. Yes, you may feel fatigue or pain; however, your ability to navigate these challenges can change day in and day out.

InforMS: How would a person know if they’re anxious or depressed because of their MS, because of stress, or because they have clinical anxiety or depression?

Elissa: It might not be important to pinpoint this exactly; instead, it’s more constructive to explore the feelings and address the concerns they bring up. If you have anxiety about the future or your relationships with support partners are turbulent, it can be beneficial to focus on those specific issues. This is why it’s important to unravel what is causing the stress. The statistics vary widely depending on how exactly you’re measuring it, but upwards of 30-60% of people living with MS experience anxiety and/or depression during their lifetime. Anxiety and depression are very treatable with the help of a mental health professional. A combination of talk therapy and medication has been proven helpful to many people living with MS. Medication can be a short-term tool to get you over a hump, or it may prove effective over the long-term. Your personal preferences should be discussed with your provider and they should be willing to find a solution that you’re comfortable with.

Many stressors don’t exist in a vacuum. It would be nice if that was true. They can all be interconnected and interrelated in various ways. Maybe you are stressed because your fatigue has been worse lately and you have had to cancel plans. This may lead to worry about how others will take your need to cancel plans, will you be able to do things in the future, or will others still include you. All of this can create a great deal of depression and/or anxiety symptoms and also make MS symptoms feel worse too.

InforMS: A common stressor for individuals living with MS is communication with their support partners. What does this look like and what are some good ways to work through it?

Elissa: It can be difficult for people to talk about MS, especially when they don’t have words and language to talk about it or to describe what they are feeling. Often there are fears involved and those are also challenging to articulate and discuss. Attending educational classes together can help people develop a shared language to talk about MS. This can also be a place to hear others experiences and connect with others going through similar situations which can help with communication and help support partners hear other perspectives of people living with MS. Recognizing that the fears of the support partner and the person living with MS are often the same can create a starting point for a discussion. Frustration and anger may come up as people try to talk about MS. This is common and no one will get it right 100% of the time. Have grace with yourself and with each other. Try to talk about situations before emotions are heated or agree to take a break and come back to talking about something if tempers flare. Usually, everyone is coming from a place of love and concern even when they don’t have the ability to express it that way.

InforMS: How can family members and support partners of individuals living with MS contribute to stress reduction and provide emotional support to their loved ones?

Elissa: Ask what is needed instead of assuming. Let them know you’re concerned and interested in how they are doing but understand when it’s not a good time for them to talk.
It is important to remember that the fears about having MS are similar for both the individuals living with MS and their support partners. The fears may just show up differently. Remembering that communication can be messy in dealing with MS and giving each other grace and humility to make mistakes is important in trying to manage stress.

InforMS: Stress management is crucial for people with MS. Could you share some practical strategies or coping mechanisms that individuals with MS can use to reduce stress in their daily lives? Are there any unique challenges that individuals with multiple sclerosis might encounter when trying to manage stress, and do you have specific recommendations for addressing these challenges?

Elissa: It can be really hard to manage stress when living with MS as it is a chronic illness and can be a variable disease. It is important to remember that just because today is a bad day, that doesn’t mean that tomorrow will be a bad day.

Having self-compassion for oneself can also help with managing stress. This is something that is way easier to say than it is to do. Self-compassion isn’t an excuse, it is a way of trying to help with managing the stresses of living with a chronic illness. Know that progress is not linear. It’s more like a roller coaster ride with ups and downs and twists and turns.

We have to think about what we can control and what we can’t control. This is an important part of managing stress – recognizing that there are times we think we can control certain things and we can’t, and times we think we can’t control certain things but we actually have some influence over the situation.

Other ways to manage stress are to find movement with your body, journaling, mindfulness breathing exercises, rest, ask for help, and get more comfortable with saying “no”.

InforMS: At what point should an individual living with MS, who is grappling with stress, consider reaching out to a professional like yourself for support and guidance?

Elissa: If there is an inclination of a problem or concern, I would recommend reaching out. Managing stress can be like a weed-pulling it when it is small is way easier, yet we don’t always think that it is a concern when it is small. Support and guidance don’t have to be long term. The scariest part is making the phone call and showing up initially.

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