On March 11, 2021, Patient Worthy attended an educational seminar hosted by the Cleveland Clinic titled Neuromyelitis Optica Spectrum Disorder (NMOSD): Educational Seminar for Patients, Family Members and Caregivers Focus on Adult and Pediatric Patients. The program provided a valuable overview of NMOSD and discussed some of the latest updates in the research and treatment related to the disorder.
One portion of the program, titled Living with Chronic Disease, focused on the challenges that people living with long term, potentially debilitating issues face. The session was hosted by Amy Sullivan, PsyD, ABPP. Amy is the Director of Behavioral Medicine & Research at the Mellen Center for MS at the Cleveland Clinic.
Chronic Illness Challenges
Amy began her presentation by highlighting the great variety of different issues faced by those living with a chronic disease. An important aspect of many chronic diseases is that may of the symptoms may not be noticeable or visible. Some of these symptoms can include mood disorders such as depression, fatigue, cognitive difficulties, sexual dysfunction, and chronic pain. These are often some of the most debilitating symptoms faced by patients that can completely disrupt their ability to function normally and degrade quality of life.
Chronic illness is more common than you think; around half of US adults face chronic illness in some fashion. A quarter of US adults have more than one. In addition, seven of the top ten causes of death are chronic illnesses. It’s an uphill battle faced by millions of people.
Depression in NMOSD and MS
In the context of neurological disorders especially, such as NMOSD and multiple sclerosis (MS), mental health struggles such as depression are more common. Around half of MS patients complain of depression symptoms. Depression in particular is a major challenge because of the cascade of other challenges it can cause, such as relationship stress, poor treatment adherence, exacerbation of disability, and cognitive difficulties. Depression can often be triggered as the affected person realizes that their “old life” that they enjoyed before the diagnosis can’t come back.
Patients face many social challenges; some people may not believe that patient since symptoms may not be visible. Others find talking about their illness highly stressful, whereas others find it helpful. People with chronic illnesses also have to be deal with communicating their needs and limitations. Acceptance and adaptation are critical for allowing the chronically ill to continue to grow and flourish in their lives.
Chronic illness can require a multidisciplinary approach that includes medication, behavioral treatment, physical treatment/rehab, and clinical research. In Dr. Sullivan’s field of behavioral medicine, the approach in chronic illness is often divided into three areas: adjustment, stress management, and depression.
Adjustment refers to the tendency towards anxiety and/or depression in those recently diagnosed in the first three months. Approaches such as cognitive behavioral therapy (CBT), breathing exercises, and more are often critical interventions for all three of these areas. Depression, especially for MS, receives extra attention. The good news is that while depression is prevalent in MS and NMOSD, it can still be treated effectively. CBT, the Kubler Ross Grief/Acceptance/Adapation model, and medications are often used in combination.
Ultimately, the main point of Dr. Sullivan’s presentation was that without proper mental health care and treatment, no other disease interventions will be as effective as they should be. For the chronically ill, managing invisible symptoms such as mental health can be one of the most important steps in retaining a good quality of life.
