By Rosalind Dorlen, PsyD, as narrated by Hallie Levine
Depression and anxiety are common in people with multiple sclerosis. That’s not surprising. While multiple sclerosis is unique in that it doesn’t affect everyone the same way, there are some universal symptoms that affect just about everyone, such as: B. Fatigue, muscle stiffness and pain.
In addition to restricted mobility, some patients also experience cognitive effects. But what’s particularly difficult about MS is that it’s a remitting disease. There are times when symptoms improve dramatically and patients feel they have been given a new 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 living with MS is feeling out of control. Some people are presented with a diagnosis when they are young, in their teens or 20’s, and some people don’t find out they have it until years later. A diagnosis can often only be made when symptoms are very advanced and patients are quite debilitated. Additionally, the array of symptoms can be confusing and frustrating. It can feel like you no longer have control over your body. People may no longer be able to work or engage in activities they once enjoyed. They can even lose control of their emotions. About 10% of patients suffer from pseudobulbar affect (PBA), which is uncontrollable episodes of laughing or crying.
One of the most important things patients can do is try to regain that sense of control. I compare it to the weather. You have no control over it, but you can look at the weather forecast and prepare yourself. Gaining some knowledge can be comforting.
This can mean learning about MS from reputable websites like the National Multiple Sclerosis Society website, or joining online support groups. Once you learn more, it’s less scary. And with knowledge comes a sense of empowerment.
Don’t be afraid to show that you are vulnerable. In our society, there is a lot of pressure on people to maintain a stiff upper lip and deal with health conditions like MS. We see it especially in men. I have many male patients with the disease who have embraced the John Wayne mentality. As a result, we often assume that men are not as affected by MS as women, although this is not true.
It’s really important that all patients with MS feel comfortable talking about their condition, including their fears. You need to make sure they stay connected to others, especially their close family and friends. This in turn will help build their resilience and enable them to better cope with their MS.
For example, I had a patient who had terrible depression due to isolation during the pandemic. She couldn’t see people in person and had a hard time staying connected with family virtually. I encouraged her to register with the MS Society, which allowed her to connect with other patients. That helped her enormously. She found it very comforting to make friends with other people going through similar difficulties. She didn’t feel as alone and it gave her more emotional strength to deal with her challenges.
Cultivate a hopeful attitude. When I work with my MS patients, I emphasize that their situation will improve. New drugs are constantly coming onto the market. The treatments we have today are far better than the treatments of a decade ago. When a negative thought crosses their mind, I encourage them to imagine something positive. This helps their brain adopt a hopeful attitude.
Another thing I emphasize to patients is that this can also be a tremendous time for self-growth. As people deal with the shock of a diagnosis and reflect on the hardships of the past few months or even years, many report that they begin to experience a deeper spiritual connection and greater self-esteem. While a condition like multiple sclerosis can decrease self-esteem, patients can also build the resilience they need to feel better.
practice mindfulness. Research shows that mindfulness strategies like meditation can improve quality of life and reduce depression, anxiety, and sleep problems in people with multiple sclerosis. You don’t have to spend hours on it. Choose a mantra that you find empowering, such as “I am strong,” and chant it softly during stressful situations. That way, you’ll be better able to deal with roadblocks when they appear.
Mindfulness is also a form of self-care that is so important for patients with MS. As I explain to people, it takes kindness to survive in this world, and sometimes the first person you have 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. Make time to eat right, exercise, and do activities that you enjoy. I have patients who take classes online to keep their minds active and encourage social connections. It’s easy for people with MS to engage in negative self-talk and disgust about their bodies. If so, make a list of everything you’ve ever accomplished in your life. This will help break this destructive cycle.
There is no doubt that living with MS is not easy and comes with its own psychological challenges. But if you focus on some of the above exercises and stick to your routine as best you can – even if it’s as simple as getting up in the morning, making your bed, showering and preparing breakfast – it will help immensely. All of these things help instill a sense of stability, even during times when you feel like your world is collapsing.