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Chronic Illness Can Make It Hard to Trust Your Body

Emily Barta

When it comes to our health, we often hear how important it is to trust or listen to our bodies: If you’re sleeping more than usual, your body is letting you know it needs to recharge. If you’re craving leafy greens, your body is telling you it’s low on key nutrients. But while it might make sense for the average person to rely on bodily clues, for many people living with chronic conditions, this seemingly sensible advice can be almost impossible to follow. 

For one thing, chronic illness often comes with chronic pain. When pain is part of daily life, paying close attention to every ache and pang could just make the symptoms harder to tolerate. On top of that, examining and listening to your body can be an emotional trigger.

“It’s very complex. There can be anger toward oneself and one’s body for failing the person or for being the obstacle that’s not allowing them to have the life they wanted,” explains Beth Darnall, a researcher and pain management specialist at Stanford Health Care. “There can also be a lot of loss involved, especially if it’s a new diagnosis and the person is unable to do the things they used to.”

Not everyone with a chronic condition feels misled by their body, but for those who do, it can be helpful to develop strategies to work through the emotions. “Taking a look at whether you’re experiencing feelings of anger or injustice is an important starting point,” Darnall says. Feeling that way for long periods of time can increase stress, pain and inflammation, and is associated with worse mental and physical health outcomes

Here’s how six people living with chronic illness deal with not being able to trust their bodies — and what experts think of their coping tools. 

Writing

Charis Hill, 32, was a college athlete and marathoner before being diagnosed with ankylosing spondylitis in 2013. It’s a type of arthritis in the spine that causes pain and inflammation between vertebrae. “I don’t know how to listen to my body because I was trained for decades to push through pain to achieve personal records and score goals,” says Hill, who lives in Sacramento, California. Often, her body doesn’t give signals when she experiences small pains. If Hill tries to push today, she won’t know she’s overdoing it until it’s too late. “Besides,” she says, “if I listened to the changing pain and fatigue in my body every day, I’d be visiting the ER weekly.”

While Hill has learned to block off and ignore some of her pain and fatigue, she finds the “trust your body” adage comical. “It is a bit like falling out of a relationship with my own body; we’re no longer partners in tandem,” she says. “I grasp all I can of life now, in the body I have today, because I don’t know what my body will be like tomorrow.”

One way she manages living with her condition is by writing about it, both for her personal blog and other outlets. “That’s how I make sense of my thoughts and emotions,” she says. “And being part of a bigger cause — raising awareness and changing policies to help people living with lifelong diseases have better lives — keeps me going and gives me a reason to continue finding ways to live and not just survive.”

What experts say: “Expressive writing has been shown to be highly therapeutic and an outlet for emotional expression,” says Darnall. “For some people, journaling can really be a nice vehicle to explore what’s under the surface — ‘What am I feeling in relation to my body? — and experience those emotions.” People can often then release those feelings. 

Mindfulness

“It’s hard to feel a sense of true trust in your own body when, out of nowhere, you could experience fatigue or joint pain or simply feel run down for the entire day, despite following all of your doctor’s recommendations,” says Beverly Friedmann, 30, who lives with hypothyroidism and a vitamin-B12 deficiency. “While ‘trust your body’ can be sound advice, I can’t always listen to my body if I want to keep up with all of my work, family and time-sensitive commitments. Sometimes I have to ignore my symptoms.” 

To lessen the anxiety of living with unreliable symptoms, Friedmann, who lives in New York City, makes stress management a priority. “I practice yoga, meditation and mindfulness, and have participated in counseling in the past,” she says. “I’ve found it’s easier to manage the uncertainty of my conditions by speaking about them openly and with transparency. I also really believe in loving your own body despite any health conditions and being extremely [grateful] for all that you have.”

What experts say: Practices such as meditation, mindfulness-based stress reduction and compassion training can help people release unhelpful thoughts and emotions, Darnall says: “You learn to recognize that it’s natural and normal to have those thoughts and emotions, but that they aren’t necessarily helpful.” In a study of 12 chronic pain patients coauthored by Darnall, compassion meditation training helped reduce pain severity and anger, and increased pain acceptance. A separate 2016 review suggests that self-compassion might help both lower stress levels and promote healthy behaviors in chronically ill people.

Focusing on the everyday

In January 2014, Casey Kaczmarek became bedridden and sick “seemingly overnight.” Over the course of the year, doctors diagnosed her with more than 15 chronic health issues, including a systemic autoimmune disease called Sjogren’s syndrome, adrenal fatigue, anxiety disorder and IBS. She spent the next four and a half years intermittently stuck in bed. “It was very difficult to trust my body,” she says, “and terrifying to think that there was one more illness or scary symptom lurking around the corner.”

The sudden and drastic change in her state of health made her feel like she’d been betrayed by her own body. “But one of the things that affected me most was wondering, ‘Why me?’” she adds. “I would see other people smoke, drink, make very unhealthy food choices, not exercise, party — and yet I was the one who was sick and bedridden.” But dwelling on her bad luck didn’t make Kaczmarek feel better, so she made an effort to overhaul her attitude and lifestyle habits. She switched to a mostly organic and unprocessed diet, prioritized sleep, kicked off each day with prayer and meditation and, once she could get out of bed, started walking outside for 10 to 15 minutes each day. “No matter how challenging it was, I made myself believe that I would heal if I didn’t give up,” says Kaczmarek, now 38, who lives in Beaverton, Oregon. 

What experts say: “Research shows that while medical intervention can be extremely helpful, what we do on a day-to-day basis really steers our health outcomes,” Darnall says. “Quality sleep, physical activity, good nutrition and stress management can help us move in the direction we want to go, rather than feeling helpless or focusing on what we can’t do.” Concentrating on a positive future, she adds, can further support good health. 

Community support

“‘Listen to your body’ is advice rooted in a linear concept of recovery that just doesn’t exist for a huge number of people,” says Clouds Haberberg, 32, who has three chronic conditions: an inherited connective tissue disorder called hypermobile Ehlers-Danlos Syndrome, bipolar disorder and postural tachycardia syndrome, an issue defined by lightheadedness or fainting when someone goes from lying down to standing up, on account of too little blood returning to the heart. In addition to constant pain, they have “a mind that sometimes acts as a muffler.” “It’s difficult to believe that me and my body are on the same team,” says Haberberg, who lives in London. “I also feel at odds with the abled people in my life who mean well but just don’t seem to understand. It’s very isolating.”

Haperberg has found support from friends, a therapist and a community of disabled people on Twitter. “We support and validate each other, and we know when it’s time to offer coping strategies and when to just step back and comfort,” they say. “We often help each other figure out what to say to doctors or access other types of support.”

What experts say: Oftentimes the worst aspect of pain is how much it interferes with someone’s ability to maintain their relationships and their identity in the world, Darnall says. Finding a community of other people who’ve been in your shoes can help you see that you’re not alone; it can also be a sounding board and a source of advice on coping with your situation.

Comparing past experiences

Listening to her body helped Cade Leebron, now 27, get diagnosed with multiple sclerosis in March 2011. “I felt like there was something serious happening in my body that no one was listening to,” she says. “I looked up my symptoms online and then basically had to demand medical testing from my doctor, who thought I was overreacting.” Leebron’s insistence on being tested for MS led to a diagnosis within a few months.  

But to manage her MS symptoms effectively, Leebron has learned that she can’t always take what her body tells her at face value.The Ohioan experiences intense pain, as well as migraines that earn a “10 out of 10 on the pain scale,” she says. “If I listen to my body [when those problems flare up], when it’s basically yelling at me ‘Hey, you’re dying!’, I’d spend a lot more time taking myself to the ER.” 

Instead, she asks herself a series of questions: Have I felt this kind of pain before? What did it mean then? How long did it last? What did I need to do to get through it?” This helps her slow down and determine what steps to take.

What experts say: Reflecting on past experiences provides framing and context for your current situation, which can help reduce stress and provide some comfort, Darnall says. “You’re acknowledging that you have a history of success in managing these situations — you survived before, and this too will pass.”

Therapy

Joint paint, stomachaches, fatigue, inflammation and a burning sensation in her arms are the norm for Allyson Byers, 28, who lives in Los Angeles. Diagnosed with anxiety, depression, migraines and hidradenitis suppurativa, a skin condition that causes painful bumps under the skin, Byers has “no idea what kind of day I’m going to have when I wake up in the morning,” she says. “I can’t make plans. I can’t do things that a healthy 20-something can do.” Some days the inflammation is so bad that she can’t even walk.

In addition to practicing yoga and meditation when she’s feeling up to it, Byers sees a therapist twice a week. “I learned that it’s okay for me to grieve the fact that my body doesn’t ‘work’ like other bodies do,” she says. “Working through these feelings has allowed for positive things to emerge or new ways of thinking. I have learned how to set boundaries with people and not feel guilty when I need to say no to plans. I’ve learned how to advocate for myself and take care of my needs. And I’ve learned that I can still have a full and beautiful life despite the emotional and physical pain.”

What experts say: “Therapy not only provides a safe environment where emotions are allowed to be expressed,” Conlon says; “cognitive behavioral therapy helps people reframe the way they’ve begun to see themselves or they way they think the world views them.” Therapists can also teach people coping techniques and help them make the changes necessary to create a meaningful life, she adds.

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