Coping | IBD | Information
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Photo of a person walking walking along a path through the woods. The light shines in from the left side.
“Talking to someone won’t help you,” the doctor insisted in a condescending tone as she leaned over my hospital bed. She went on to mutter something about how the hospital’s ‘crazy’ doctors would laugh at me if I told them that I needed help. My condition was physical, not mental. I simply needed to stay confined to the hospital’s eighth floor until the treatments that failed before magically started working.
Sure, I needed to improve physically. My entire abdominal area throbbed as if someone were ripping into it with a steak knife and I was sprinting to the bathroom so often that my IV machine ran out of battery. However, this physical pain paled in comparison to the sense of fear and hopelessness I felt each time I woke up to the white, sterile walls of my hospital room. Mental exhaustion washed over me like a tidal wave over a small sandcastle. I was tired of trying and failing. I was infuriated with my defective body that kept betraying me regardless of how well I cared for it. Meditation and reading helped at first, but I felt myself quickly fading away. Eventually, I lost the energy to read and hence my ability to escape. By this point, I could hardly recognize the pale, washed-out face that looked back at me in the bathroom mirror.
I felt alone, but I was not. Numerous studies reveal that Inflammatory Bowel Disease (IBD) patients are at high risk for depression and anxiety. This is especially true for those dealing with hospitalizations and surgeries. Unfortunately, our healthcare system largely ignores this reality and focuses almost exclusively on the physical symptoms. I am fortunate to have a terrific GI doctor who taught me a few tips for handling stress, but this is an exception. Throughout my hospital stays and surgeries, no one asked me how I was coping emotionally or if I was experiencing any mental health problems. No one gave me the name of support groups or instructed me how to seek help if I needed it. It was as though my mental health was irrelevant.
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Photo of two people talking outside as the sun sets.
In reality, mental health is critical. First and foremost, patients are people and our pain (both physical and mental) matters, even if it cannot be seen in lab work or CT scans. Medical trauma is real. Spending hours in pain, being poked and probed, losing all privacy, being rushed into surgery, and never knowing what the next day will bring takes its toll on human beings. As if this is not enough to make my point, science provides another reason. While anxiety and depression do not cause IBD, research suggests that it can exacerbate the condition (Tribbick, Salzburg, Ftanou, et al., 2015). Patients who have depression and anxiety symptoms, such as myself, experience more flare-ups, greater disease complications, hospitalizations, and larger medical bills. If mental health can be so physically destructive to our bodies, why is it not taken seriously? Why is it not included in general disease treatment? Why is it completely ignored?
I attempted seeking help several times throughout the first year of my diagnosis only to be discouraged by endless fights with insurance and then psychiatrists with no room in their schedules. How could someone who hardly had the energy to take a shower spend the day on the phone negotiating with a health insurance company? How could I spend hours hearing therapist after therapist tell me that they did not have any available appointments? How could I make sure I did not end up with mounting medical debt? So, I focused on my physical health while letting my mental health slide.
My approach failed. Neither my mental or physical health improved. The weeks following my emergency proctocolectomy revealed that my anxiety was skidding out of control. I woke up from every nap, thinking I was back in the hospital. One night, I even mistook my window unit air conditioner for an IV machine and began frantically grasping for the pole so that I could go to the bathroom. Other nights were worse; I woke up from dreams of being rushed into high-risk emergency surgery. I would awake with a pounding heart and a tear-covered face. I was finally compelled to begin the strenuous process of finding help.
After hours on the phone with my insurance company and inquiries to dozens of booked therapists, I finally found someone on my insurance accepting new patients. I also found the peer support organization Girls with Guts, which quickly connected me with other young women who understood IBD and medical trauma first-hand. These resources offered tremendous relief. I slowly learned methods to cope with the flashbacks and relax while in the hospital. As the months passed, the nightmares haunted me with less frequency, and I made connections within the IBD community that helped me feel less alone. I finally began the long-overdue process of healing. It took time. There was no magic method or pill to erase my memories or put an end to my nightmares, but I was headed in the right direction. My therapist taught me how to reprocess traumatic experiences and my fellow Girls with Guts inspired me not to be ashamed of myself or my disease.
Looking back, I cannot help getting a little angry with both myself and the healthcare system. Why did I wait so long to demand the help I needed? Why did I feel the need to place my physical health above all else? I also question why no one in the healthcare system understood the need for a more holistic approach. As a patient advocate, I am calling for change. Doctors and hospital staff need to have a better understanding of the connection between mental health and chronic illness so that they can take care of the whole patient.
Read more about the impact of stress and depression on IBD patients.
Tribbick, D., Salzberg, M., Ftanou, M., Connell, W. R., Macrae, F., Kamm, M. A., Bates, G. W., Cunningham, G., Austin, D. W., & Knowles, S. R. (2015). Prevalence of mental health disorders in inflammatory bowel disease: an Australian outpatient cohort. Clinical and experimental gastroenterology, 8, 197–204. https://doi.org/10.2147/CEG.S77567
