10 Tools to Cope with Chronic Illness
Tap into your feelings, connect with others and be an advocate to manage living with chronic disease
How do you hold on when everything feels like it's falling apart? As a person living with an autoimmune kidney disease for three decades (and a four-time kidney transplant recipient), people often ask me this question. Here are 10 helpful coping tools I use to muddle through hardships, hold onto hope and find joy.
10 Coping Tips
Acknowledge the difficulties. I'm a joy seeker, but life is not a continual joy fest. That might seem obvious, but maybe not. American social media culture often showcases a happy-at-all-times façade. It's especially important for people with chronic illness to avoid falling into the trap of comparison. Spoiler alert: Nobody's real life shines all the time, and it's unhealthy to repress, spin or ignore our challenges.
Let your feelings run wild. When intrusive thoughts ruminate, resist the tendency to shut them out. Visualize difficult emotions as characters who deserve your attention. (If vivid images don't come to mind, refer to Pixar Animation's movie "Inside Out 2.") Greet them. "Oh, hello, anger. Hello, sadness. Stay as long as you like." Imagine these thoughts as a pack of frisky pups that need exercise. Exhaust them until they rest.
Contain your feelings on paper. After these puppies run frenetically through my brain, I find it helpful to write what I'm feeling. Journaling in difficult times can improve emotional regulation, leading to greater self-awareness, problem prioritization and stress relief. A dedicated journal, a simple yellow pad, the notes application on a phone, a Word document, a rogue napkin — any form works to corral and clarify messy thoughts.
Ask yourself, would I show up for them if the circumstances were reversed?
Connect with your people. People need people in times of trouble. Yet, those with chronic illness often feel a foggy sense of shame, leading to loneliness and isolation, which can further damage physical health. Resist the tendency to say you're fine when you're not fine. It's OK to call a friend and say, "I'm having a hard day. Do you have time to talk?" Sharing your honest emotions and hardships with your loving friends and family is appropriate — that's what friends and family are for. Ask yourself, would I show up for them if the circumstances were reversed? Fostering stable and supportive relationships gives us the support we need to cope with stressful life challenges. It's important to let people love you.
Find new people. It helps me to know I'm not alone. About 129 million people in the United States have at least 1 major chronic disease, and an estimated 37 million Americans have chronic kidney disease (most commonly caused by diabetes and high blood pressure.) There are abundant resources and communities available for connection. Seek a chronic illness support group, an online community, or a one-on-one with another patient.
A meditation to help you let go. After my diagnosis, I did everything in my "power" to turn my situation around with positive thoughts and visualizations. Trying to control things I could not control became exhausting, like endlessly rowing upstream.
Meditation can help. This visualization technique calms the quest to control the uncontrollable. Visualize yourself in an inner tube on a river, rowing frantically against the current. Feel how the exertion depletes you. Now, turn the inner tube around and float in harmony with the river. Go with the flow and feel the peaceful surrender in your body.
Trying to control things I could not control became exhausting, like endlessly rowing upstream.
Make a lucky list. When my invincibility shield shattered in my early 20s, the crisis clarified my priorities — the people I love, the gift of being alive and embracing life's impermanence. Although I will always toggle between joy and sorrow, I've learned that joy is paradoxical. We often hunt for joy like an elusive buried treasure, searching for the secret. But through life's tricky mix of beauty and bummers, I've realized joy hides in plain sight.
Here's a tool to find it. Make a lucky list. (And keep it simple.) Today, I'm lucky for … blue skies, the perky jolt from my morning coffee, my puppy's affection, a knock-out meal, an engrossingly good book, a rocking belly laugh and how fun it is to sing wildly off-key. Even on the hardest days, I can always find one lovely thing.
Information empowers patients to advocate their illness with greater clarity.
Two words to help manage anxiety. When I tested positive for COVID-19 the first time, my immunosuppressed status added a layer of anxiety like an unwieldy weighted blanket. Waiting for symptoms, I told a friend how daunting it felt to know COVID-19 would soon wipe me out. She said two words that stick with me. "Not necessarily."
"Not necessarily" reminds me I don't know what lies ahead. It makes no sense to project anxieties (with fictitious specificity) onto future outcomes and call it reality. Why borrow trouble? "Not necessarily" is a two-word reminder to stop the anxiety spiral before it starts.
Become an Advocate
Advocate for yourself. Enlisting supportive advocates eases the burden when we face medical challenges. Likewise, self-advocacy is critical for patients who manage chronic care. Here's how to become a better advocate for yourself. Study reliable educational resources about your condition. Ask questions at your doctor and clinic visits. Learn the "why" behind the prescribed treatments and recommended requirements to maintain your health. Information empowers patients to advocate their illness with greater clarity.
Advocate for others. Chronic illness is constantly recurring, but in many cases, the experience feels like chronically intermittent illness. I'm always managing my care, but I'm not sick all the time. So when I am able, one of the most helpful tools at my disposal is to help others.
That's why I'm happy to serve as the board chair of the Minnesota National Kidney Foundation and a PEER Mentor, an ambassador to educate about organ donation and an advocate for patients who manage uncertainty. Explore volunteer opportunities that allow you to employ your hard-won insights and research the mission of organizations that align with your own. Call a friend that is facing hardships. Send a card. Write an opinion editorial that expresses your unique viewpoint. Share your story. When chronic illness patients have the wherewithal, service can transform pain or problems into purpose.
