When Lisa was diagnosed with multiple sclerosis (MS), she tried her best to prepare herself for coping and living with the disease. She spoke with her doctor, found a specialist that she liked, and researched the disease and its treatment. She became aware of the potential physical symptoms of MS and spoke with her friends and loved ones about how they could best support her through any numbness, fatigue, pain, or impaired vision. Lisa even put together a plan for avoiding common MS symptom triggers. However, what Lisa wasn't prepared for were the psychological effects of coping and living with MS. When she experienced incontinence, she felt ashamed and embarrassed. When she experienced extreme fatigue, she felt frustrated and judged herself for not getting things done. Overall, Lisa struggled to cope with her perceived loss of independence and her anxiety about the triggers to come, the triggers yet unknown, and the next pattern of symptoms that she might experience.
Looking past the physical symptoms
When considering neurological diseases such as MS, many of us think almost exclusively about the physical symptoms. We think about having trouble seeing or walking, about issues with bowels and bladders, and about the pain, fatigue, or numbness associated with MS. What we often fail to consider is how we cope with those symptoms. What is it like to feel completely fatigued? To suddenly experience urinary leakage as a young adult? To have chronic pain? To experience paralysis? To feel some of these symptoms one time, then experience a completely different set of symptoms the next? What is it like to have to manage all these fears – not just for now, but for life?
MS is the most common neurological disease diagnosed in young adults between the ages of 20 and 40. Currently, the National Multiple Sclerosis Society (NMSS) estimates that about 2.3 million people in the world have been diagnosed with MS.1 Of these 2.3 million people, it is estimated that 36 to 54 percent of them meet criteria for an anxiety disorder, the majority of which experience symptoms of generalized anxiety disorder. Additionally, it is estimated that over half experience depression at least once throughout the course of MS, with many individuals experiencing both depression and anxiety.2, 3
How are depression and anxiety related in MS?
Previous studies have indicated that, in MS, higher levels of anxiety predict higher levels of depression.4 However, little is known about how anxiety leads to depression in individuals with MS. To examine this, Dr. Marie-Claire Gay, from the University of Paris West, conducted a study on 189 individuals with MS.5 Each of the participants completed measures of anxiety, depression, level of functional impairment, frequency of negative emotions, and emotion regulation. The results indicated that anxiety was related to depression through emotion regulation and the frequency of negative emotions. In other words, higher levels of anxiety were associated with experiencing both a greater frequency of negative emotions and a decreased ability to manage those emotions. In turn, experiencing negative emotions and a decreased ability to regulate emotions were associated with higher levels of depression. The results also indicated that the level of functional impairment was associated with greater levels of both anxiety and depression. In other words, lower levels of current neurological functioning and a greater presence of MS symptoms were associated with greater levels of anxiety and depression.
What can I do?
Being diagnosed with a disease like MS can be scary and managing its symptoms can be anxiety-provoking. While experiencing anxiety in this situation is, of course, completely normal, it can be helpful to be mindful of that anxiety in order to decrease the likelihood of experiencing depression later. Thus, if you or a loved one have been diagnosed with MS, it can be helpful to find a therapist to help cope with and manage the psychological aspects of living with MS. Just like you would check in with your MS specialist about your physical symptoms, it can be helpful to check in with a mental health professional about how you're feeling about being diagnosed and living with MS.
1. National Multiple Sclerosis Society. Who gets MS? Retrieved from http://www.nationalmssociety.org/What-is-MS/Who-Gets-MS
2. Wood, B., van der Mei, I. A., Ponsonby, A. L., Pittas, F., Quinn, S., Dwyer, T., et al. (2012). Prevalence and concurrence of anxiety, depression and fatigue over time in multiple sclerosis. Mult Scler J, 19, 217-224.
3. Viner, R., Fiest, K. M., Bulloch, A. G., Williams, J. V., Lavorato, D. H., Berzins, S., et al. (2014). Point prevalence and correlates of depression in a national community sample with multiple sclerosis. Gen Hosp Psychiat, 36, 352-354.
4. Brown, R. F., Valpiani, E. M., Tennant, C. C., Dunn, S. M., Sharrock, M., Hodgkinson, S., et al. (2009). Longitudinal assessment of anxiety, depression, and fatigue in people with multiple sclerosis. Psychol Psychother, 82, 41–56.
5. Gay, M. C., Bungener, C., Thomas, S., Vrignaud, P., Thomas, P. W., Baker, R., et al. (2017). Anxiety, emotional processing and depression in people with multiple sclerosis. BMC Neurology, 17(43), 1-10.