Ein-shei Chen was diagnosed with amyotrophic lateral sclerosis (ALS, or Lou Gehrig’s disease) in 1995. Yet she hasn’t let the degenerative disease derail her daily life or dull her dreams. Chen is the president of the Motor Neuron Disease Association of Taiwan. She’s given speeches at ALS conferences all over the world. She’s even convinced the government to build an ALS clinic in her city of Taichung — the second facility in all of Asia.
Chen can only move her big toe. She writes emails and communicates with others using special technology. Composing an email with five short sentences takes her 20 minutes. But she continues to email with her family, friends and other ALS patients. She also visits patients in person with the help of her caregivers and relatives.
Chen’s remarkable story is featured in Richard Cheu’s empowering book Living Well With Chronic Illness: A Practical and Spiritual Guide. Cheu provides pastoral counseling to patients in New York City medical and hospice centers. He helps patients find peace with their illness and live their lives to the fullest.
Getting diagnosed with a chronic illness is overwhelming. It can unleash a range of reactions, from shock to fear to grief, said Cheu, also a stress management consultant, Catholic deacon and a caregiver himself. The diagnosis can shatter your self-image, he said. It’s as though you draw a line in the sand, one side representing you before the diagnosis, the other side representing you after.
While chronic illness changes your life, it doesn’t have to stop you from enjoying it. Chen is just one example of many individuals who’ve carved out meaningful, satisfying lives with a debilitating disease.
When she was first diagnosed with ALS, Chen was heartbroken and depressed. She isolated herself from her loved ones. But talking with another ALS patient at her monthly support group helped Chen start accepting her diagnosis and reach out for help.
Accepting your condition and asking your physicians about your options opens up a world of resources and support, Cheu said.
Taking Charge of Your Health Care
Cheu stressed the importance of taking charge of your health care with these three steps: Stop, look and listen. When you’re first diagnosed, stop, “and just sit down, and take some deep breaths.”
“Look at your disease, and learn everything you can about it, [such as] how it can affect you.” Think of it as learning a new language. If you were traveling to France, and wanted to make the most of your trip, you’d learn some French, he said.
Finally, “listen to your advisors,” or your health care team. Your doctors advise you on what to do, but you ultimately make your own decision on how to proceed, he said.
Taking charge of your health also includes: engaging in healthy behaviors, coping with your emotions and creating calm every day. For instance, you can meditate, journal or spend time with loved ones.
Focusing on Today
“Every person is unique, and has unique concerns that day in that moment,” Cheu said. That’s why he asks his patients to focus on today and consider: “What do you think is the most important thing to achieve today?”
Having a Hero
In addition to Ein-shei Chen, Cheu features other chronically ill individuals in Living Well With Chronic Illness. “Everyone needs a hero,” he said. Pick a hero who inspires you to keep going, someone who’s overcome major hurdles but is living life to the fullest.
Loneliness is a common issue for chronically ill patients, Cheu said. After you’re diagnosed, the people in your life might stop calling and inviting you to social events. You also might distance yourself from others. The first step in overcoming loneliness is to recognize that it’s part of chronic illness, he said.
Next, in his book, Cheu encourages readers to “create peaceful and meaningful solitude.” As he explains, “Happiness starts within, and the best relationships happen when you are at peace with yourself regardless of your present condition or circumstances.” Choose activities you find restorative and that bring you joy, such as praying, spending time outdoors, reading or playing music.
Cheu also suggests considering how you’d like to improve your relationships. Would you like to enhance your current connections or make new friends? Would you like to hang out with people who share your religious beliefs or individuals who have the same illness? Then make a list of specific ways you’ll approach these relationships. Cheu also underscored volunteering and having face-to-face interactions.
In his book, Cheu defines spirituality as “a way of thinking and living that uses the positive aspects of human thinking, feelings, and behavior to achieve meaning and purpose in life.” He suggests exploring your personal values and making a commitment to live them. Consider how you’re “going to live out this life, today and every day.”
Cultivating spirituality also includes regularly checking in with yourself and asking whether your current life reflects your values, Cheu writes. He also notes the importance of gratitude, and showing your appreciation for your caregivers.
Having a chronic illness can be devastating and make you feel incredibly helpless. While you have little control over your diagnosis, you can take charge of your responses and reactions. A chronic illness doesn’t have to stop you from leading a fulfilling life.