The Emotional and Psychological Dimensions of Living with IBD
Living with inflammatory bowel disease is such a multifaceted set of challenges. There are obviously physical things we struggle with – from abdominal pain to frequent and urgent bathroom trips, to extra-intestinal manifestations affecting any and all of the other systems of our bodies.
But there's 1 in particular I want to write about today. Mental health.
Crohn's and UC are more than just physical
The emotional and psychological dimensions of living with IBD come in many colors, shapes, and sizes, and I've experienced them so differently as the years have gone on.
In the beginning, there were emotions like fear, frustration, anger, and sadness that felt ever-present. And sometimes even all-consuming. Personally, I went from being a mostly healthy young adult to a 23-year-old who couldn't leave home and often spent much time in the bathroom and in bed.
It was devastating. I felt betrayed by my body and like I couldn't do anything to gain back control over the situation.
Psychologically demanding from the start
Then, there was the diagnostic journey. I have small bowel Crohn's disease, which took more than 6 years to correctly diagnose due to its location and my symptoms.
During this time, medical professionals I looked to in a trusting manner let me down over and over again, dismissing my pain, stating that I must be struggling with a mental health disorder that was manifesting physically (rather than the other way around), and ultimately trying to tell me that I shouldn't trust my own body or the signals it was giving me.
An emotional exhale...
2016-2018 were pivotal years for me in my IBD journey. I was finally correctly diagnosed, and although it took 3 lines of treatment to find the right one, I reached remission status.
My mental health took one exhale, and then it began playing the deep seeded what if game. What if remission ends. What if it gets as bad as it once was. What if, what if, what if... I wrote about this a while ago, what it was like to live in the waiting. Always expecting the other shoe to drop.
Living in constant fear with IBD
For the last few years, the other shoes have been dropping in different ways. While my IBD disease activity has been mostly stable, IBD itself has caused and impacted other health problems I now must contend with more frequently.
I constantly feel like I must remain hypervigilant inside of myself, frequently performing body scans, medication inventory checks, scheduling routine and emergent doctors appointments, and understanding the fear that living in flux has brought to my life on a daily basis.
Crohn's and UC are psychologically draining
This season, I've struggled with an issue not directly related to my IBD, but one tangentially connected – a hernia in my esophagus that has relegated me to an all liquid diet. The pain, physical illness, and weakness I've experienced in the last few months has been all too reminiscent of the years prior to my diagnosis, and it's something I've been speaking openly and candidly about with my therapist. It's greatly affecting how I approach each day.
I'll be honest, the fear doesn't just disappear when you hear the word remission – especially with a disease where remission can end at any time for any reason without any warning. I've tried to get used to the unpredictable, but it's been really hard for me.
Have you found anything that's worked for your mental health in balancing life with IBD and the emotional anguish of unpredictability?
How open are you about being diagnosed with IBD?