Written by Rosalind Durlin, PsyD, as narrated to Haley Levine
Depression and anxiety are common among people with multiple sclerosis. This is not surprising. While multiple sclerosis is unique in that it does not affect everyone in the same way, there are some general symptoms that affect almost everyone, such as fatigue, muscle stiffness, and pain.
Some patients also experience cognitive effects, along with limited movement. But what’s particularly difficult about MS is the fact that it’s a transforming condition. There are times when symptoms improve dramatically, and patients feel like they’ve been given a new lease on life. When they encounter exhausting repetition, it can be very frustrating and frustrating. 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 of not being able to control it. Some people get the diagnosis when they are young, in their teens or in their 20s, and some people don’t learn they have it until years later. Often, a diagnosis may not be made until symptoms are very advanced and the patient is severely debilitated. In addition, the range of symptoms can be confusing and frustrating. You may feel like you are not in control of your body anymore. People may no longer be able to work or do the activities they used to enjoy. They may even lose control of their emotions. About 10% of patients experience pseudobulbar affect (PBA), which are uncontrollable episodes of laughing or crying.
One of the most important things patients can do is try to regain that sense of control. I liken it to the weather. You have no control over it, but you can look at the weather forecast and prepare yourself. If you gain some knowledge, it can be comforting.
This may mean learning about MS on reputable sites, such as the National Multiple Sclerosis Society website, or joining online support groups. Once you learn more, it becomes less scary. And with knowledge comes a sense of empowerment.
Don’t be afraid to reveal your vulnerability. There is a lot of pressure in our society on people to keep their upper lip hard and hardened with health conditions such as MS. We see it especially among men. I have several male patients with the disease who have adopted the John Wayne mentality. As a result, we often assume that men are not affected as often by MS as women, when in reality this is not the case.
It is really important that all patients with MS feel comfortable talking about their condition, including their concerns. They need to make sure they stay in contact with others, especially their family and close friends. This, in turn, will help enhance their resilience and allow them to deal with MS better.
I had one patient, for example, who suffered from horrible depression due to isolation during the pandemic. She couldn’t see people face to face, and found it almost difficult to keep in touch with family. It encouraged her to enroll in the MS Society, which allowed her to connect with other patients. This helped her greatly. I found making friends with other people going through the same struggles was very relaxing. She didn’t feel lonely, and it gave her more emotional strength to deal with her challenges.
Cultivate an optimistic outlook. When I work with my MS patients, I stress that they will get better. There are new drugs appearing all the time. The treatments we have today are much better than the treatments that existed 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 adopt an optimistic attitude.
Another thing I assure patients is that this can also be a tremendous time for self-growth. As people grapple with the shock of the diagnosis and review the difficulties they faced in the past 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 resilience 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 powerful, such as “I am strong,” and recite it silently in stressful situations. This will allow you to better deal with roadblocks as they arise.
Mindfulness is also a form of self-care, which is very important for people with multiple sclerosis. 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 right, exercise, and do activities that are pleasurable to you. I have patients who take classes online, as a way to keep their minds active and to enhance social connections. It’s easy for people with MS to get caught up in negative self-talk and to look at their own bodies with disgust. When this happens, make a list of everything you have accomplished in your life. This will help break this destructive cycle.
There is no doubt that living with MS is not easy and has its own mental health challenges. But if you focus on some of the above exercises and stick to your routine as much as possible – even if it’s something as simple as getting up in the morning, making your bed, taking a shower, and making breakfast – it will help a lot. All of these things help provide a sense of stability even during those times when you feel like your world is falling apart.