When Crohn’s Disease Makes You Feel Betrayed by Your Body

It’s hard to believe what can happen in a year. I went from a model of health at age 20 to being told I had an incurable disease at age 21. On-off bouts of abdominal pain became constant stomach cramping, followed by 104-degree fevers, chronic fatigue, and weakness.

The next decade was a journey of medical twists and turns. Crohn’s disease is like that. The word “remission” never left my doctor’s lips. Just when I felt well again, I would be hospitalized with an acute flare. It felt like a constant uphill battle. I never knew when my symptoms would flare up and blindside me.

Ultimately, a bowel resection surgery put me into surgical remission, but it wasn’t until I gave birth to my three children that I grew to truly love and trust my body again — and appreciate all of its capabilites. It didn’t happen overnight, but I’ve learned a lot over the past few decades. I hope my lessons can help you, too.

It’s not uncommon for people with Crohn’s disease to feel as if their body has betrayed them. Repeated flares, pain, and urgency can gradually erode your trust that your body will do what you tell it to do. Over time, symptoms can become increasingly unpredictable and unreliable, adding to the mistrust and resentment you may feel.

This loss of trust can evolve into anxiety or hypervigilance, particularly in social settings, says Megan Riehl, PsyD, a psychogastroenterologist and associate professor of medicine at the University of Michigan in Ann Arbor. There may be “rigid planning around bathrooms or food options, or you may develop overcontrolling routines,” she says. “Over time, the world can feel smaller as people organize their lives around preventing symptoms, rather than living fully.”

Adding to the problem, people with Crohn’s may also feel alone and misunderstood. “Because IBD can be invisible, people may also internalize blame or shame when others don’t see the effort it takes to function,” says Dr. Riehl.

Sometimes, even doctors or other healthcare professionals can trigger these feelings. People who are blamed or dismissed can develop mistrust in the medical system, which can cause them to underreport symptoms, delay seeking care, or even doubt their own instincts, she says.

As frustrated as you may be with your body, it’s also important to be compassionate with it. And yes, you can do both. Frustration and compassion are not mutually exclusive. Rather, they’re simply part of living with a chronic illness.

“Self-compassion does not require eliminating frustration or other difficult emotions. It involves treating oneself with kindness and understanding, even while experiencing those challenges,” says Riehl.

Here are a few things you can do to regain trust in your body, including some that have worked for me.

1. Acknowledge reality. Instead of saying, “I shouldn’t feel sick,” try saying, “It’s okay that I’m sick, and I can still care for myself in this moment.” This affirmation validates the difficulty of the situation (yes, you’re sick) but also acknowledges your efforts to cope (you’re caring for yourself).

“The goal is to cultivate self-compassion and resilience, not to force yourself to feel happy or strong all the time,” says Riehl.

2. Notice something neutral about your body. Try acknowledging your feelings or sensations, but without trying to change anything. “Spend a minute paying attention to your breath or feeling your feet on the ground,” says Riehl. “This can help you reconnect with your body safely.”

She says, “Pairing body awareness with something enjoyable like listening to music, spending time in nature, or connecting with supportive loved ones can also make each step feel safer and more encouraging,” adding that kindness and consistency are key. Over time, this will help you notice and accept your body without judgment or expectation.

3. Gently assess your lifestyle habits. Speak to your doctor or a registered dietitian about shoring up your eating habits. A diet that’s rich in fruits, vegetables, lean proteins, and healthy fats and limited in processed foods will help fuel your body, allowing you to feel capable, rather than fragile. Doing regular low- to moderate-intensity exercise, including both cardiovascular and resistance training, improves strength, reduces fatigue, and can boost your mood. Talk to your doctor about safe physical activity for you, and then start with activities you enjoy to help stay consistent. And remember to take a rest when you need.

4. Consider seeking psychological support. Working with a therapist on cognitive behavioral therapy and practicing mindfulness and acceptance can help you cope with anxiety, depression, and stress, says Riehl. It can also help you develop self-compassion and improve your quality of life.

5. Give yourself time. Rebuilding compassion for your body is a gradual process. It’s normal to experience a range of emotions, especially at the beginning or after a challenging time.

6. Focus on the moments when your body shows up for you. Life is hectic, but try to reflect on the moments you’re feeling well. Look up at the sky and take a deep breath of gratitude when you’re out for a walk. Pause when you wake up in the morning and feel well enough to tackle the day.

As a mom of three children, my full-term, healthy pregnancies and ability to be an active, stay-at-home mom for nine years have been a constant reminder of how beautiful and fulfilling life can be, even with Crohn’s disease.

• Ongoing Crohn’s disease flares, along with pain and urgency, can sometimes make people with Crohn’s disease feel their body has betrayed them.
• Even though you may feel frustrated by your body, it’s also important to show compassion to yourself. That can mean acknowledging reality (yes, you’re sick), but also giving yourself grace (you’re taking care of your body the best you can).
• Try to notice feelings or sensations, but without trying to change anything. This will help you view your body neutrally, rather than negatively.
• Give yourself time to rebuild trust in your body. It’s capable of amazing things.