How to cope with invalidation, isolation, and stigma
Written by Anna Katherine Black, PhD
Licensed Clinical Psychologist
GI Psychology
Living with an Invisible Illness
If you live with Irritable Bowel Syndrome (IBS), chances are you’ve heard someone say, “But you don’t look sick.” It’s often meant kindly, but it can cut deep. IBS is an invisible illness—one that affects your quality of life in profound ways, even when there are no outward signs.
IBS impacts nearly 10–15% of adults worldwide (American College of Gastroenterology, 2023). It’s a disorder of gut-brain interaction, meaning that the communication between your digestive system and nervous system—the gut-brain connection—can become dysregulated. This can lead to abdominal pain, bloating, diarrhea, constipation, or nausea, often without visible evidence.
Yet because IBS doesn’t “look” like illness, patients frequently encounter skepticism from coworkers, teachers, or even loved ones. Over time, that disbelief can lead to shame, isolation, and emotional exhaustion.
The Hidden Weight of “Looking Fine”
Invisible illnesses, such as IBS, often come with the pressure to perform wellness—to go to work, socialize, or attend school despite fatigue, urgency, or pain. Many patients describe the fear of being judged as unreliable or “dramatic.”
For example, one college student shared that her professors assumed she was lazy when she requested restroom breaks during exams. A young professional said he skipped work events because the anxiety about symptoms became overwhelming.
The Rome Foundation, which sets global standards for diagnosing functional GI disorders, emphasizes that these experiences are not “in your head.” IBS involves real physiological changes in the brain-gut pathways that regulate digestion, stress, and emotion.
The National Institutes of Health (NIH) confirms that emotional stress can intensify gut symptoms, and in turn, gut discomfort can trigger anxiety—creating a vicious cycle. This isn’t weakness; it’s how brain-gut health works.
Why Invalidation Hurts
Being dismissed or disbelieved can make symptoms worse. Research has shown that social invalidation—feeling ignored or not taken seriously—activates the same brain regions involved in physical pain. Over time, this can heighten distress and amplify GI discomfort.
The American Psychological Association (APA) notes that chronic invalidation contributes to depression, anxiety, and even trauma responses in patients with invisible illnesses. For those living with IBS, stigma can worsen both physical and emotional well-being, making it harder to seek help or maintain hope.
Finding Support: You’re Not Alone
Healing begins when your story is met with understanding rather than doubt. Here are a few ways to cope:
1. Build your self-efficacy
Research from the Crohn’s & Colitis Foundation highlights that believing in your ability to manage symptoms increases resilience and quality of life. Techniques like relaxation training, gut-directed hypnosis, and GI-focused cognitive behavioral therapy (GI-CBT) can help strengthen confidence and reduce symptom severity.
2. Reconnect with your body, not against it
When IBS flares, it’s easy to feel angry at your body. But mind-body approaches such as clinical hypnosis and mindful breathing support the gut-brain connection—helping your nervous system shift from “fight or flight” to calm regulation. Studies show that hypnosis can reduce pain, decrease inflammation, and lengthen remission periods in GI conditions (Keefer et al., 2013; Mawdsley et al., 2008).
3. Communicate your needs clearly
Whether at work, school, or in relationships, setting boundaries and asking for accommodations can reduce stress. For example, request a seat near the exit, flexible bathroom access, or virtual meeting options. These are legitimate needs, not special favors.
4. Connect with others who understand
Online and local support groups through organizations like the Rome Foundation and GI Psychology can help you feel less alone. Sharing stories with others who “get it” reduces shame and builds community.
Reframing the Narrative
Living with IBS means carrying an illness others can’t always see—but that doesn’t make it any less real. Each day you navigate uncertainty, advocate for yourself, and show up despite discomfort is a victory.
As one GI psychologist shared, “You are more than your diagnosis. The way you care for yourself—body and mind—can change how you experience your symptoms.”
If you’ve been told “you don’t look sick,” remember: visibility isn’t the measure of suffering or strength. You deserve compassion, validation, and care that honors both your physical and emotional health.
Takeaway
IBS is an invisible but real disorder of the gut-brain connection.
Emotional invalidation can worsen symptoms—but understanding, therapy, and self-compassion can ease the burden.
Mind-body treatments like GI-CBT and clinical hypnosis are evidence-based, effective, and available.
Key takeaways:
- Telehealth makes evidence-based gut–brain therapies more accessible nationwide.
- RCTs support the effectiveness of digital gut-directed hypnotherapy and internet-based CBT.
- Patients can successfully manage DGBI symptoms with structured virtual programs and qualified providers.
It’s time to seek out support and care that sees the whole you. Explore our resources, schedule a free consultation, or reach out at admin@gipsychology.com.
References
American College of Gastroenterology. (2023). Irritable Bowel Syndrome: Diagnosis and Treatment Guidelines.
Barberio, B., et al. (2021). Anxiety and depression in inflammatory bowel disease: A systematic review. Digestive and Liver Disease, 53(4), 434–442.
Keefer, L., & Keshavarzian, A. (2006). Hypnotherapy for IBD and IBS: Mechanisms and outcomes. American Journal of Gastroenterology.
Mawdsley, J. E., et al. (2008). The effect of hypnosis on stress and inflammation in IBD. Gut, 57(4), 499–507.
Rome Foundation. (2024). Disorders of Gut-Brain Interaction: Diagnostic Criteria and Education Resources.
Taft, T. H., et al. (2022). Psychological distress and IBD symptom exacerbation. Journal of Clinical Gastroenterology., 56(7), 593–601.
National Institutes of Health (NIH). (2023). Brain-gut communication and digestive health.
American Psychological Association (APA). (2023). Chronic illness, stigma, and emotional well-being.Crohn’s & Colitis Foundation. (2024). IBD and mental health: The importance of behavioral therapy.