{"id":18362,"date":"2019-09-27T13:28:16","date_gmt":"2019-09-27T18:28:16","guid":{"rendered":"http:\/\/thepapergown.zocdoc.com\/?p=18362"},"modified":"2023-03-03T15:29:07","modified_gmt":"2023-03-03T20:29:07","slug":"chronic-illness-can-make-it-hard-to-trust-your-body","status":"publish","type":"post","link":"https:\/\/www.zocdoc.com\/blog\/healthcare-trends\/chronic-illness-can-make-it-hard-to-trust-your-body\/","title":{"rendered":"Chronic Illness Can Make It Hard to Trust Your Body"},"content":{"rendered":"

When it comes to health, “listen to your body” is a common piece of advice: If you\u2019re sleeping more than usual, your body is telling you it needs to recharge. If you\u2019re craving leafy greens, your body is letting you know 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 rule can be almost impossible to follow.\u00a0<\/span><\/p>\n

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. <\/span>On top of that, examining and listening to your body can be an emotional trigger.<\/p>\n

\u201cIt’s very complex. There can be anger toward oneself and one\u2019s body for failing the person or for being the obstacle that’s not allowing them to have the life they wanted,\u201d explains Beth Darnall, a researcher and pain management specialist at <\/span>Stanford Health Care<\/span><\/a>. \u201cThere 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.\u201d<\/span><\/p>\n

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. \u201cTaking a look at whether you’re experiencing feelings of anger or injustice is an important starting point,\u201d Darnall says. Feeling that way for long periods of time can increase stress, <\/span>pain<\/span><\/a> and <\/span>inflammation<\/span><\/a>, and is associated with worse <\/span>mental<\/span><\/a> and <\/span>physical health outcomes<\/span><\/a>.\u00a0<\/span><\/p>\n

Here\u2019s how six people living with chronic illness deal with not being able to trust their bodies \u2014 and what experts think of their coping tools.\u00a0<\/span><\/p>\n

Writing<\/h2>\n

Charis Hill, 32, was a college athlete and marathoner before being diagnosed with ankylosing spondylitis in 2013. It\u2019s a type of arthritis in the spine that causes pain and inflammation between vertebrae. \u201cI 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,\u201d says Hill, who lives in Sacramento, California. Often, her body doesn\u2019t 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. \u201cBesides,\u201d she says, \u201cif I listened to the changing pain and fatigue in my body every day, I’d be visiting the ER weekly.\u201d<\/span><\/p>\n

While Hill has learned to block off and ignore some of her pain and fatigue, she finds the \u201ctrust your body\u201d adage comical. \u201cIt is a bit like falling out of a relationship with my own body; we’re no longer partners in tandem,\u201d she says. \u201cI 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.\u201d<\/span><\/p>\n

One way she manages living with her condition is by writing about it, both for her <\/span>personal blog<\/span><\/a> and other outlets. \u201cThat\u2019s how I make sense of my thoughts and emotions,\u201d she says. \u201cAnd being part of a bigger cause \u2014 raising awareness and changing policies to help people living with lifelong diseases have better lives \u2014 keeps me going and gives me a reason to continue finding ways to live and not just survive.\u201d<\/span><\/p>\n

What experts say:<\/b> \u201cExpressive writing has been <\/span>shown to be highly therapeutic<\/span><\/a> and an outlet for emotional expression,\u201d says Darnall. \u201cFor some people, journaling can really be a nice vehicle to explore what’s under the surface \u2014 ‘What <\/span>am<\/span><\/i> I feeling in relation to my body? \u2014 and experience those emotions.\u201d People can often then release those feelings.\u00a0<\/span><\/p>\n

Mindfulness<\/h2>\n

\u201cIt’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,\u201d says Beverly Friedmann, 30, who lives with hypothyroidism and a vitamin-B12 deficiency. \u201cWhile ‘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.\u201d\u00a0<\/span><\/p>\n

To lessen the anxiety of living with unreliable symptoms, Friedmann, who lives in New York City, makes stress management a priority. \u201cI practice yoga, meditation and mindfulness, and have participated in counseling in the past,\u201d she says. \u201cI’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.\u201d<\/span><\/p>\n

What experts say:<\/b> Practices such as meditation, mindfulness-based stress reduction and compassion training can help people release unhelpful thoughts and emotions, Darnall says: \u201cYou learn to recognize that it’s natural and normal to have those thoughts and emotions, but that they aren’t necessarily helpful.\u201d In <\/span>a study of 12 chronic pain patients<\/span><\/a> coauthored by Darnall, compassion meditation training helped reduce pain severity and anger<\/span>, <\/span>and increased pain acceptance.<\/span> A separate <\/span>2016 review suggests that self-compassion might help both <\/span>lower stress levels and promote healthy behaviors<\/span><\/a> in chronically ill people.<\/span><\/p>\n

Focusing on the everyday<\/h2>\n

In January 2014, Casey Kaczmarek became bedridden and sick \u201cseemingly overnight.\u201d Over the course of the year, doctors diagnosed her with more than 15 chronic health issues, including a systemic autoimmune disease called Sjogren\u2019s syndrome, adrenal fatigue, anxiety disorder and IBS. She spent the next four and a half years intermittently stuck in bed. \u201cIt was very difficult to trust my body,\u201d she says, \u201cand terrifying to think that there was one more illness or scary symptom lurking around the corner.\u201d<\/span><\/p>\n

The sudden and drastic change in her state of health made her feel like she\u2019d been betrayed by her own body. \u201cBut one of the things that affected me most was wondering, ‘Why me?’\u201d she adds. \u201cI would see other people smoke, drink, make very unhealthy food choices, not exercise, party \u2014 and yet I was the one who was sick and bedridden.\u201d But dwelling on her bad luck didn\u2019t 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. \u201cNo matter how challenging it was, I made myself believe that I would heal if I didn\u2019t give up,\u201d says Kaczmarek, now 38, who lives in Beaverton, Oregon.\u00a0<\/span><\/p>\n

What experts say:<\/b> \u201cResearch shows that while medical intervention can be extremely helpful, what we do on a day-to-day basis really steers our health outcomes,\u201d Darnall says. \u201cQuality 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.\u201d Concentrating on a positive future, she adds, can further support good health.\u00a0<\/span><\/p>\n

Community support<\/h2>\n

“‘Listen to your body’ is advice rooted in a linear concept of recovery that just doesn’t exist for a huge number of people,\u201d 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 \u201ca mind that sometimes acts as a muffler.\u201d \u201cIt\u2019s difficult to believe that me and my body are on the same team,\u201d says Haberberg, who lives in London. \u201cI 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.\u201d<\/span><\/p>\n

Haperberg has found support from friends, a therapist and a community of disabled people on Twitter. \u201cWe support and validate each other, and we know when it\u2019s time to offer coping strategies and when to just step back and comfort,\u201d they say. \u201cWe often help each other figure out what to say to doctors or access other types of support.\u201d<\/span><\/p>\n

What experts say:<\/b> 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\u2019ve been in your shoes can help you see that you\u2019re not alone; it can also be a sounding board and a source of advice on coping with your situation.<\/span><\/p>\n

Comparing past experiences<\/h2>\n

Listening to her body helped Cade Leebron, now 27, get diagnosed with multiple sclerosis in March 2011. \u201cI felt like there was something serious happening in my body that no one was listening to,\u201d she says. \u201cI looked up my symptoms online and then basically had to demand medical testing from my doctor, who thought I was overreacting.\u201d <\/span>Leebron\u2019s insistence on being tested for MS led to a diagnosis within a few months. \u00a0<\/span><\/p>\n

But to manage her MS symptoms effectively, Leebron has learned that she can\u2019t always take what her body tells her at face value.The Ohioan experiences intense pain, as well as migraines that earn a \u201c10 out of 10 on the pain scale,\u201d she says. \u201cIf 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.\u201d\u00a0<\/span><\/p>\n

Instead, she asks herself a series of questions: <\/span>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?\u201d This helps her slow down and determine what steps to take<\/span><\/i>.<\/span><\/p>\n

What experts say:<\/b> Reflecting on past experiences provides framing and context for your current situation, which can help reduce stress and provide some comfort, Darnall says. \u201cYou’re acknowledging that you have a history of success in managing these situations \u2014 you survived before, and this too will pass.\u201d<\/span><\/p>\n

Therapy<\/h2>\n

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 \u201cno idea what kind of day I’m going to have when I wake up in the morning,\u201d she says. \u201cI can’t make plans. I can’t do things that a healthy 20-something can do.\u201d Some days the inflammation is so bad that she can’t even walk.<\/span><\/p>\n

In addition to practicing yoga and meditation when she’s feeling up to it, Byers sees a therapist twice a week. \u201cI learned that it’s okay for me to grieve the fact that my body doesn’t \u2018work\u2019 like other bodies do,\u201d she says. \u201cWorking 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.\u201d<\/span><\/p>\n

What experts say:<\/b> \u201cTherapy not only provides a safe environment where emotions are allowed to be expressed,\u201d Karen Conlon<\/a>, a psychotherapist in New York, says; \u201ccognitive behavioral therapy helps people reframe the way they’ve begun to see themselves or they way they think the world views them.\u201d Therapists can also teach people coping techniques and help them make the changes necessary to create a meaningful life, she adds.<\/span><\/p>\n

\n

Ready to book a doctor’s appointment? Visit Zocdoc.<\/span><\/a><\/span><\/h1>\n","protected":false},"excerpt":{"rendered":"

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