Hospitalizations, surgeries, invasive procedures, negative interactions with healthcare providers — it’s a never-ending list of touchpoints for medical trauma when you live with a chronic illness like inflammatory bowel disease (IBD). According to the Crohn’s and Colitis Foundation, an estimated 1 in 4 people with IBD experiences medical trauma at some point of their patient journey. And this trauma can affect everything from decision making about managing your IBD, to managing your day-to-day life.
I have personally dealt with medical trauma numerous times. It once took a nurse eight tries to get my IV started when I was hospitalized for an abscess; I nearly passed out from the pain of a bowel obstruction in a grocery store bathroom; and like many people, I’ve been gaslit in the emergency room. Most recently, I was made to feel like I was weak and dramatic as a nurse belittled me in triage at the hospital. After waiting for hours to be seen, I lost my cool and yelled back at her with tears running down my face, “I’m not a wimp! I have Crohn’s disease!”
Possible Causes of IBD Traumas
As someone who has lived with Crohn’s for more than 19 years, I may have thicker skin and can tolerate more “trauma,” but that doesn’t mean it’s not a struggle.
There is trauma that happens when you’re diagnosed with a chronic illness without a cure. There’s trauma when you’re told you’ll need lifelong medical intervention and treatment, often coming in the form of injections or intravenous medications with serious side effects. Then, there are the reflections and thinking about how IBD may have robbed you from fulfilling your dreams or simply being able to go through daily life like your peers.
There are various causes of trauma that occur within healthcare.
- Gaslighting is when a medical provider invalidates a patient’s concern and the patient begins to question whether their experience is real.
- Patients can feel neglected and unsupported; often they feel like they’re just a number.
- Systemic barriers occur when people lack coverage from insurance and do not have access to expensive medications and procedures.
- People from marginalized groups, such as women, people of color, individuals who are gender nonconforming, and immigrants may experience microaggressions, which are subtle or unintentional forms of discrimination, as well as outright aggression.
Types of Trauma Responses
Fight The immediate and direct reaction to the event, such as hypervigilance (a state of heightened awareness and watchfulness)
Flight When a person avoids an event. For instance, not seeking medical care because of the fear of how you’ll be treated.
Freeze Being unable to react to the event, such as disconnecting from the present moment, going on autopilot, “shutting down” during treatment or flares.
Fawn Trying to please others, such as disregarding your needs or downplaying the reality of your experiences, to avoid conflict with healthcare professionals or caregivers.
Types of Trauma
PTS and post-traumatic stress disorder (PTSD) are terms often used interchangeably, but they refer to different experiences related to trauma. While PTS is distressing, it does not typically impair daily functioning or require formal treatment. Symptoms of PTS are temporary anxiety, irritability, difficulty sleeping, or flashbacks related to a traumatic event.
What It Takes to Cope With Medical Trauma
Coping with medical trauma while living with IBD involves addressing both the psychological and physical challenges that come with ongoing health issues. By finding a robust support network of trusted medical specialists, engaging in stress management practices such as mindfulness and relaxation techniques, and maintaining a healthy lifestyle through a balanced diet, exercise, and adequate sleep, those with IBD can feel empowered and more comfortable with receiving medical care.
You can learn how to be vulnerable with others and openly communicate your needs and concerns with friends, family, and a therapist, and in this way address the pain points of your personal patient journey and feel more in control while managing a disease that requires constant attention and care.
Treating IBD Medical Trauma
Because people with IBD often have repeated emergency department visits and emergency surgeries and may utilize treatments with rare but serious adverse effects, it is possible that a proportion of these patients will develop PTS. It’s important to know there is help available, such as mental health resources from the Crohn’s and Colitis Foundation.
According to Laurie Keefer, PhD, a professor of medicine and psychiatry at the Icahn School of Medicine at Mount Sinai n New York City, the best approach to dealing with medical trauma is to talk about your struggles, journal about your pain, and then create corrective experiences. Sometimes this might involve changing providers or even going to a different hospital.
“Living inside a body that has unpredictable responses to day-to-day experiences makes it very hard to avoid trauma,” explains Dr. Keefer. “Therefore, IBD patients are very susceptible to experiencing micro-traumas which can make them feel fatigued, hypervigilant to potential threats, and confused about what symptoms are urgent and which ones are to be expected. This is why we encourage all people living with an IBD to check in with a mental health professional to make sure they are developing the necessary coping skills that buffer them against trauma and build psychological resilience.”
Find a mental health provider who specializes in PTS and PTSD. It’s important to get to the right mental health clinician who can provide evidence-based treatment for PTS and PTSD. Your gastroenterologist should regularly initiate conversations with you about feelings of trauma, particularly following diagnosis, a hospitalization, or surgery.
According to the American Psychological Association, there is no “right” way to process and cope with trauma. Your process is allowed to change and evolve. Recognize that you are not alone in your struggles and don’t hesitate to discuss this and be as transparent as possible with your healthcare provider so they can help you seek the additional care you need to heal mentally, physically, and emotionally.
Beneficial treatment to recover from trauma can include therapy, eye movement desensitization reprocessing (EMDR), trauma focused cognitive behavioral therapy (CBT), somatic experiencing, medication, art therapy, narrative therapy, mindfulness, breath work, journaling, support groups both in person and online, and yoga.
Keefer says once a person starts processing their medical trauma it allows for a new and hopefully “corrective” experience with medical care.
“They can also develop a healthier relationship with their body and feel more confident in decision-making about their health and well-being going forward,” says Keefer.
The Takeaway
If you’ve ever felt distressed by managing IBD, you are not alone — many people experience symptoms of post-traumatic stress (PTS) due to medical treatments and hospital experiences. Frequent hospitalizations and procedures can take a toll on your mental health. Remember to reach out to a mental health professional or support group to share your feelings and develop coping strategies. Take things one day at a time and celebrate the small victories and the resilience it takes to live life fully with an unpredictable chronic illness.
