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Uncertainty: Dealing with Mental Health Challenges in Times of Change

 As we all navigate these difficult times, many individuals are experiencing issues with mental health. We recently talked with Elissa Berlinger, Licensed Clinical Social Worker, MS counselor and educator, to learn more about these challenges and strategies for taking care of your emotional well-being.

InforMS: During these unprecedented times, we are all experiencing a range of challenges. Not surprisingly, recent studies have found heightened rates of anxiety and depression. What are you observing about the mental health challenges people are experiencing?

Elissa Berlinger: I’ve been reflecting on the themes of what I’m hearing in my conversations with my clients – because every week, it’s a little different. At the beginning of the crisis in March, every hour it felt like something new was coming. We were getting new information, new guidance, and we didn’t know what to expect moment to moment. We all had to be very quick to figure out what was going on and how best to take care of ourselves and our loved ones. Now, we’ve shifted from this “quick response” phase, and we are all trying to navigate prolonged uncertainty and to figure out what this new “normal” will look like.

This uncertainty is surfacing in different ways for everyone. Some individuals are feeling cooped up or stuck, feeling trapped at home, or feeling fearful for their health and safety. We’re also observing defiance, frustration, anger and confusion about the path forward. People are struggling with not feeling connected and missing physical interactions. Individuals are able to connect with people virtually online or by phone which has been a great thing. But I’m hearing a lot more of people wanting to connect more, especially those who live by themselves or who are in difficult living situations.

InforMS: Would you say challenges that people had before all of this began are particularly magnified right now?

Elissa: Anything that was festering under the surface that we could somewhat avoid or wasn’t as big of an issue is now just popping up out of the surface. People are having feelings of heightened anxiety about safety, protecting ourselves and others, and facing unknowns about the future. That anxiety may have always been sitting there, but now may be a lot more prominent for some individuals.

We are spending more time in stillness and we aren’t able to avoid certain feelings in the same ways. We can’t run around and do things and see people – we are kind of stuck with ourselves in certain ways.

Maybe things that used to feel safe or comforting no longer feel comforting or safe. We’re not able to distract ourselves, and go off to a restaurant or bar. Or fly across the country to see someone on a trip, or just go down the street to go somewhere else, or go to work. It is harder to distract ourselves from our feelings.

InforMS: You’ve discussed some parallels of this experience to being diagnosed and living with a chronic disease like MS. Could you talk about that a bit more?

Elissa: MS feels so personal and what is going on is massive and global. But when we think about the experience of being diagnosed and living with MS, I think there are some core similarities to what we see happening right now on a societal level.

The unknown and the uncertainty is probably one of the hardest things of the human condition. And when you are diagnosed with MS, you have to now face the unknown and the uncertainty day in and day out in a way you never expected. With COVID 19, everyone is facing degrees of uncertainty and the unknown.

Some people feel relief when they receive their MS diagnosis — now they know what it is, so they can do something about it. Other people are angry, they’re fearful; they’re worried about what it means. Some people are able to reach a point where they accept that they have MS – it’s a part of them, but not all of who they are.

I’m thinking about the COVID-19 pandemic in a similar way. This isn’t going to be all of who we are as a society and as individuals – instead, it is a part of who we are. And we all adjust to it differently. Part of the grieving process with an MS diagnosis is the feeling of loss of control: Can I trust my body; can I feel safe in my body? With COVID-19, the loss of control can manifest as: Is it safe for me to go out; is it safe for me to see people; am I safe to walk around the block? And with both situations: What is my future?

With MS, it’s a part of us, we have to adjust to it and live differently than we thought or expected or envisioned for ourselves. We never imagine getting diagnosed with MS. And I don’t think many of us imagined this pandemic happening. Yet it’s here, we can’t deny it. So it’s important to think about ways that we can make some room for it in order to have it just be a part of us, but not consume us.

InforMS: How are you helping individuals and families cope with and navigate these times of uncertainty?

Elissa: I’m helping people understand this experience as a grief process as it relates to change and loss. Things aren’t how they used to be. And part of grieving change is facing a spectrum of potential feelings that are incredibly uncomfortable — anger, fear, loneliness, panic, confusion, and fatigue.

There is also a level of denial that can happen — wanting to pretend that everything is normal. As things are starting to open up, people want to get back to how things were before. And the truth is that it’s not going to be how it was before. We don’t know when things will return to normal.

And that is really difficult — none of us are very patient people. We are seeing a range of ways that people are responding to the situation. Whether it’s defying certain orders or taking them hyper-seriously — everyone is grappling with feelings of loss of control and the loss of the sense of safety in different ways.

To navigate this grief process, I try to help people understand that it is important to name what we are feeling and to acknowledge those feelings. We don’t always know what we are feeling in the moment, but the power to connect what we are feeling and name it allows us to be able to move through it. It can seem really big and scary, but when we can notice that, it can help us.

It’s also critical for us to recognize that it’s okay to have a lot of feelings right now; because we all do. How can we not? This is unprecedented for everyone and it’s necessary to have grace and compassion for yourself. I always say to my clients, you are entitled to all of your feelings. It’s what we do with them that’s really important.

Some days are going to be easier than others and we don’t always know when those days are going to be; but we have to allow ourselves some space to have bad days. It’s easy for us to jump to worse case possible scenarios. To avoid that, it’s helpful to pause and identify the things that you can’t control and the things that you can control. We can’t entirely predict the exact course of our MS and what it will look like over time. But there are many things I can do to help control my MS or help mitigate it – adhering to DMTs, exercising, staying active and socially connected, and eating nutritious foods.

And we can’t control the existence of COVID-19, the economy, or societal behavior and rules. But, we can control our actions each day. I’ll use myself as an example. Recently, I was having an anxiety-filled morning, feeling flustered and stressed. I took a deep breath and paused. I realized that I was juggling my workload, figuring out meals during a packed day of virtual meetings, and trying to figure out when

I’m going back to my office and what I’ll need to do to prepare. I asked myself: What are the things I can control? I can make sure I have certain healthy snacks on hand. I can make sure I schedule time to take a walk around the block and limit my intake of news, because I know those actions help ease my anxiety. And I can slow down a little bit. Once I was able to name those things, I was able to continue and move on with my day in a much more effective manner and get out of the “what if” cycle in my head.

Grief processes aren’t usually linear. Realizing that maybe we’re going down one track and we hit a dead end. We just have to jump tracks, sometimes we just have to change tracks to help us keep moving forward, understanding where we’re at, recognizing what can control, and having compassion for ourselves. We must give ourselves the time, the grace, and the space to process and grieve.

InforMS: Can you talk with us more about the importance of self-compassion? What does that mean and why is it important?

Elissa: Self-compassion is really about taking care of ourselves. Part of that is managing our stress in healthy ways. Stress can contribute to heightened anxiety and depression. And stress can impact sleep, appetite, concentration, fatigue, connection, and MS symptoms.

Some of the fundamental ways to take care of ourselves include trying to eat as well as we can with nutritious foods and drinking plenty of water. And at the same time, if you have a bad day where you eat pizza and cupcakes, that’s okay, too. Part of taking care of yourself is not feeling like you have to be perfect all of the time.

Moving your body in ways that work for you to stay active is also core to self-compassion. Exercise does not mean you have to run marathons. Maybe you walk to the end of your driveway and back or walk around your block – just whatever you can do to move your body. Movement can be very helpful if you find yourself getting stuck with certain thoughts or anxieties.

Fatigue is definitely something that is increasing for many people during these times. Not just MS fatigue, but feeling drained and tired dealing with this “new normal” and the grief process we discussed earlier.

There are many sources of fatigue. We often do things to avoid uncomfortable feelings – perhaps turning to substances and overindulging in drinking and marijuana use or food. You may be sleeping significantly more than you normally would, or you may be sleeping significantly less. Improving the quality of your sleep is more important now than ever.

Limiting your intake of news and information is critical. It’s not always healthy to scroll and check new status updates 10 times a day – and maybe not even every day. I find it’s helpful to schedule one time to check the news on my phone each day. Be mindful about the sources of your news.

I know we are all getting a bit tired of the Zooms and the videos, but it’s so important to stay as connected as we can with our family and friends. I think it’s significant to recognize how quickly we have all been able to adapt and embrace some of these new ways of connecting. Talking with loved ones and trusted people about our feelings can make them not as big, scary, or as uncomfortable.

At the same time, boundaries also remain important during this time. If you’re not feeling up for doing something, you can say no. If other people are pressuring you, or if you’re not ready to go out, or connect or be social, you don’t have to. Setting those boundaries is an important tool for self-compassion and self-preservation.
If you can, I encourage people to utilize this time to intentionally slow down. Some ideas to think about to set a helpful tone for each day: Who am I checking in on or connecting with today? What expectations of “normal” am I letting go of today? What is important at this moment?

Each individual is experiencing this time in different ways and facing a range of individual challenges and worries. And each person’s approach for self-compassion will look different, too. But it’s important to identify the self-care strategies that work for you and try your best to build them into your day.

For additional mental health resources, please visit MSCenter.org/covid-resources and click the “Physical/Mental Wellness” tab.

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