By Rosalind Dorlen, PsyD, as told to Hallie Levine
Depression and anxiety are common among people with multiple sclerosis. This isn’t surprising. While multiple sclerosis is unique because it does not affect everyone in the same way, there are some universal symptoms that affect pretty much everyone, such as fatigue, muscle stiffness, and pain.
Some patients also experience cognitive effects, along with limited mobility. But what’s particularly hard about MS is the fact that it is a remitting condition. There are times when symptoms dramatically improve, and patients feel like they’ve been given a new lease on life. When they experience a debilitating recurrence, it can be very discouraging and depressing. Here are some of the strategies I use with my patients that have proven helpful.
Try to regain a sense of control. What can be so frustrating about life with MS is the feeling that you have no control over it. Some people get hit with a diagnosis when they are young, in their teens or 20s, and some people don’t learn they have it until years later. Oftentimes a diagnosis may not be made until symptoms are very advanced, and patients are quite debilitated. In addition, the array of symptoms can be puzzling and frustrating. It can feel like you no longer have control of your body anymore. People may no longer be able to work or do activities that they used to enjoy. They may even lose control of their emotions. About 10% of patients experience pseudobulbar affect (PBA), which is uncontrollable episodes of laughing or crying.
One of the most important things patients can do is to try to get that sense of control back. I liken it to the weather. You don’t have control over it, but you can look at the weather forecast and prepare yourself. If you gain some knowledge, it can be comforting.
That may mean learning about MS on reputable sites, such as the National Multiple Sclerosis Society website, or joining support groups online. Once you learn more, it’s less scary. And with knowledge comes a feeling of empowerment.
Don’t be afraid to reveal that you’re vulnerable. There’s a lot of pressure in our society for people to keep a stiff upper lip and tough it out with health conditions like MS. We see it particularly among men. I have many male patients with the disease who have adopted the John Wayne mentality. As a result, we often assume that men aren’t impacted as much by MS as women, when in fact that’s not the truth.
It’s really important that all patients with MS feel comfortable talking about their condition, including their fears. They need to make sure that they stay connected with others, especially their close family and friends. This in turn will help bolster their resilience and allow them to cope with their MS better.
I had one patient, for example, who experienced terrible depression due to isolation during the pandemic. She couldn’t see people in person, and she found it hard to stay connected with family virtually. I encouraged her to sign up with the MS Society, which allowed her to connect with other patients. That helped her enormously. She found that forging friendships with other people who were going through similar difficulties was very comforting. She did not feel so alone, and it gave her more emotional strength to deal with her challenges.
Cultivate a hopeful outlook. When I work with my patients who have MS, I stress that their situation will get better. There are new medications emerging all the time. The treatments we have today are vastly better than the treatments of just a decade ago. If a negative thought pops into their head, I encourage them to visualize something positive. This helps retrain their brain to embrace a hopeful attitude.
Another thing I stress to patients is that this can also be a tremendous time for self-growth. As people grapple with the shock of a diagnosis and review the hardships of the last few months or even years, many report that they begin to experience a deeper spiritual connection and a greater sense of self-worth. While a condition like multiple sclerosis may worsen self-esteem, patients can also build the resiliency they need to feel better about themselves.
Practice mindfulness. Research shows that mindfulness strategies such as meditation can improve quality of life and reduce depression, anxiety, and sleep problems among people with multiple sclerosis. You don’t have to spend hours on it. Choose a mantra that you find empowering, like “I am strong,” and chant it silently in stressful situations. This will allow you to better cope with roadblocks when they crop up.
Mindfulness is also a form of self-care, which is so important for patients with MS. As I explain to people, to survive in this world, you need kindness, and sometimes the first person you need to show it to is yourself.
Focus on activities that allow you to build a positive self-image, whether it’s reading a book or spending time with loved ones. Take the time to eat properly, exercise, and to do activities that are enjoyable for you. I have patients who take classes online, as a way to keep their minds active and foster social connections. It’s easy for people with MS to get caught up in negative self-talk, and to view their bodies with disgust. When this happens, make a list of everything you have ever accomplished in your life. This will help break this destructive cycle.
There’s no doubt that living with MS is not easy and carries its own mental health challenges. But if you focus on some of the above exercises and keep to your routine as much as you can — even if it is something as simple as getting up in the morning, making your bed, taking a shower, and preparing breakfast — it will help immensely. All of these things help provide a sense of stability even during those times that you feel like your world is falling apart.