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When Your Body Makes the Rules: Living With a Chronic Condition

April 16, 2022

When Your Body Makes the Rules: Living With a Chronic Condition
Six in 10. For older adults, more than eight in 10.
That’s how many Americans live with a chronic disease or health condition, according to the Centers for Disease Control and Prevention (CDC) and the Wisconsin Institute for Healthy Aging1, 2. The CDC also tells us that 4 in every 10 U.S. adults live with two chronic diseases or even more.1 Here, we will consider how you can help heal your body, mind, and spirit and live as well as possible, even if the physical condition is permanent.

What is a chronic disease or condition?
Simply put, it is a disease or health condition that lasts for months or years. The CDC defines chronic diseases as conditions that last a year or more and “require ongoing medical attention or limit activities of daily living or both.”1
Heart disease, cancer, and diabetes are the most common chronic diseases in the United States.1 Other common chronic conditions include kidney disease and lung diseases such as COPD and asthma, stroke, and Alzheimer’s disease. What else is on the list of common chronic diseases? Arthritis, Crohn’s disease or inflammatory bowel syndrome, epilepsy, multiple sclerosis, and psoriasis. 

The physical impact of a chronic condition
Coping with a chronic disease involves physical care and sometimes modification of lifestyle choices. For example, Eric has kidney disease. He manages his chronic kidney disease with medication, a well-balanced diet, physical activity, and an adequate sleep schedule. This was quite the change from his previous habits of eating primarily unhealthy food, a sedentary lifestyle and smoking. 

Depending on your condition, you may need to accept a “new normal” for everyday living. Carrol, who has multiple sclerosis, loved being active and outdoors. Hiking, biking, and even mowing the lawn were her favorite hobbies.
Slowly, she became more dependent on walkers and, eventually, a wheelchair. She and her husband had to move to a one-story house with a wheelchair ramp. Her outdoor activities seemed like a thing of the past, and her usual peppy attitude was dampened drastically. She was not one to talk about the amount of physical pain or emotional distress attached to her condition due to her desire to be independent. She didn’t talk to others about her feelings because she did not want to seem “weak.”

Individual differences in brain chemistry, upbringing, and culture affect your mental response to chronic illness. Some are “wired” to avoid thinking about their condition or wishing it didn’t exist. Others dwell on their limitations and disabilities. However, a realistic approach that lies between these two extremes is more helpful. The condition exists, and those who cope most effectively tend to seek support in practical ways, such as finding other people with the same condition or researching specific treatment options.

Helping the mind thrive
From mild to severe and common to rare, chronic diseases have something in common: They affect the mind, spirit, and body. 
When you live with a chronic illness, the mind can run amok with negative thoughts. “What if I don’t get better? What if I have to quit work? I can’t believe I’m missing another family event! I use a wheelchair—what if there isn’t a ramp to get into new restaurants or stores?”

When you feel overwhelmed by a chronic disease or the process of managing it, it can seem like you are losing your entire identity. But there is much more to who you are than these physical changes. A good way to unravel these feelings is to journal about the changes you feel when having a chronic disease. Our tool, Chronic Disease Management Through Therapeutic Writing, is a great starting point.

Emotional factors associated with better mental coping in chronic illness include having someone with whom you can share your emotions. You may share with support group members, speak with a therapist, or talk with a close friend or family member. Doing these things helps reduce depression and loneliness, which are common side effects of having a chronic condition. In fact, loneliness and a sense of isolation can be harmful to your physical health. As an example, loneliness over time can increase the risk of dementia by 50 percent.3

Helping the body thrive
Finding ways to maintain non-illness-related routines can also boost your mental health. If you’ve always gone to the grocery store on Saturdays but now have chronic knee pain, you can keep up the routine by shopping with a friend, getting a ride to the store, and using a mobility scooter to shop. 

Becoming an “empowered patient” who works with your doctor and healthcare team instead of passively waiting for their input can help you feel mentally stronger and more self-sufficient. Find a doctor who listens and empowers you. 
Be aware that relationships and social contacts can be helpful or detrimental to your mental health. Are there friends who seem invested in your being “sick” and helpless? Does the support of friends and relatives ring true, or does it seem like backhanded judgment? On learning that Winifred was diagnosed with chronic fatigue syndrome, her mother-in-law said, “Well, at least we know you’re not lazy.” Ouch!

Helping your spirit thrive
“Hope” is a thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
—Emily Dickinson
Activities commonly associated with spiritual life can help you cope with chronic illness. You may attend a church or temple, spend time in nature, or have a meditation practice. Taking time to pause, listen, and reflect each day is an effective way to deepen spiritual resilience. Being rather than doing. To quote James Taylor, “The secret of life is enjoying the passage of time.” Stop and notice. 

Most faith communities are more than willing to accommodate people with chronic conditions, from offering home visits and live-streamed services to incorporating elevators, wheelchair-accessible ramps and spaces, and support or recovery groups. Prayer groups can keep the caring going and connections alive. 

Reviewing and resetting your life goals can also be a spiritual practice, as you decide whether to pursue something despite a chronic condition (like Erik Weihenmayer, the first blind person to summit Mount Everest) and revise others (Wes and LaTasha decided not to have more children when he was diagnosed with schizophrenia, which can be genetic). You don’t have to climb Everest, but painting a picture of it might bring you just as much joy! Art and music can deepen our awareness and spiritual experiences. 

Finally, particular spiritual beliefs, such as a belief in God, the impermanence of existence, or in a divine plan, can be enormously helpful for accepting the reality of a chronic condition, our own mortality, and finding more meaning in life. 
Finding help to thrive
In the United States, chronic disease self-management programs offer support and education at a minimal cost (around $50). Nearly every state has one of these programs, which are underused because few people know about them, and doctors rarely talk about them.

Are you a job seeker with a chronic condition? Check out ChronicallyCapable.org for flexible work options. If you receive Social Security Disability Insurance and/or Supplemental Security Income or SSI income, MyEmploymentOptions.com is another option. 
Author Toni Bernhard has written four books on living with chronic illness, including How to Be Sick, from a Buddhist perspective. There are many books from other faith-based and secular perspectives. Our book, How Healing Works, by Wayne Jonas, MD, shows how healing is possible even when you live with a chronic condition. 

To find a therapist, please visit the Psychology Today Therapy Directory. 

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Chronic diseases affect the mind, spirit, and body—but there are ways to thrive.

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How Healing Works

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Four in every 10 U.S. adults live with two chronic diseases or even more. Here, we will consider how you can help heal your body, mind, and spirit and live.

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Reference: 
National Center for Chronic Disease Prevention and Health Promotion. US Centers for Disease Control and Prevention. About chronic diseases. Last reviewed April 28, 2021. Available at https://www.cdc.gov/chronicdisease/about/index.htm. Accessed March 16, 2022.
Wisconsin Institute for Healthy Aging. Living well with chronic conditions. 2021. Available at https://wihealthyaging.org/living-well-with-chronic-conditions. Accessed March 16, 2022.
 US Centers for Disease Control and Prevention. Loneliness and social isolation linked to serious health conditions. Last reviewed April 29, 2021. Available at https://www.cdc.gov/aging/publications/features/lonely-older-adults.html. Accessed March 16, 2022.

Essential Reads Basics: 
Chronic Illness

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QScore Date: 
Friday, April 15, 2022 – 5:32pm

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KEY POINTS

The CDC defines chronic diseases as conditions that last a year or more and “require ongoing medical attention.”
Individual differences in brain chemistry, upbringing, and culture affect one’s mental response to chronic illness.
Those who cope most effectively with chronic diseases tend to seek support in practical ways.

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