Being diagnosed with a chronic disease can be terrifying and mentally debilitating. Managing the diagnoses requires resilience, a positive attitude and creativity.

Susan Rubin, MD, neurologist with Endeavor Health Neurosciences Institute and the Ruth Cain Ruggles Chair of the Department of Neurology, sees plenty of chronic illnesses in her field of neurology, such as Parkinson’s disease, multiple sclerosis and epilepsy, to name a few.

“These are all diseases that they will have to live with and cope with for the rest of their lives,” said Dr. Rubin. Coping with such a diagnosis requires resilience, she said.

“We see patients who have great coping strategies and live their best lives, in spite of their disease, and participate in activities, exercise and get out and about. They have good family support and are able to — with that support and their desire to stay active — get out and do all the activities they want to do,” she said.

“We have other people who may have fairly mild symptoms but terrible coping strategies or poor resilience who seem to just get worse, complaining about their symptoms and all the things they can’t do instead of focusing on the things they can do.

That’s where resilience plays a big role in these diseases.”

Exercise

Exercise is an important tool in a person’s arsenal, said Dr. Rubin. Physical fitness can help with pain, weakness and mobility. “We refer a lot of our patients to physical therapy and encourage them to do their home exercise program to help maintain their strength and balance and flexibility,” she said.

Mental fortitude

Although it is easier said than done, accepting your body’s limitations and working within those confines can lead to a healthier state of mind and a more positive outlook. Dr. Rubin recommends that patients set realistic goals for themselves, which means identifying a problem and creating ways to overcome it, she said.

“Focus on the things that you know you can do, rather than the things you can’t do,” she said. “I had a patient, a young person, who was very disabled by her stroke. However, she did horseback riding therapy (hippotherapy) and her family made it possible for her to travel with them all over the world resulting in her leading a very full life.”

On the other end of the spectrum, she sees people embarrassed to leave the house because they have to use a cane. If the desired goal is to go someplace or do something, figure out a way to do it safely. The goal is for patients to take pride in the fact that they don’t let their disability prevent them from doing the things they want to do.

Resiliency program at Endeavor Health

Dr. Rubin’s department is in the process of developing a resiliency program for patients. It includes a website that will have short videos addressing different aspects of resiliency. Topics will include physical activity, mindfulness and appreciating your surroundings, acceptance and redirecting focus, values and meaningful actions, social connectedness, and relaxation and pleasant activities.

“It comes with worksheets patients can do to fill out their own resiliency plan of what sorts of things would help them be more resilient,” she said. “We’re very excited about it.”

The program came about through their work with chronic diseases. “We see that wide variation between the patients who have good coping strategies and those that don’t,” Dr. Rubin said. “We recognized this as a need that we need to help our patients cope better with their chronic diseases. These are often diseases they’re going to live the rest of their lives with. Many patients need that support.”

The program they used was designed initially for multiple sclerosis patients, she said. “We’ve utilized that program to develop these videos and this website that we will hopefully be rolling out in the next three to six months.”