I remember when I was first diagnosed with ulcerative colitis in 2004. My symptoms were classic and a positive occult blood test confirmed that my intestines were inflamed, but the medical system required invasive testing for our insurance cover further treatment.
I was wheeled into my colonoscopy wearing pink, fuzzy socks after obsessing for a week in anticipation of my first experience with conscious sedation. Riddled with anxiety, I could barely eat or sleep and had already canceled the procedure twice out of fear. Eventually I gave in because I wasn’t feeling better.
At the time, I had no idea how autoimmune disease would affect my life.
A relatively healthy child, I’d not taken pills other than vitamins, so medication alone was a huge change in my routine.
Adding to that were the psychological and social stressors of grappling with the idea that I was suddenly “sick” at a time in my life when my peers were flying free from their parents’ nests to pursue their dreams.
While my disease seemed to appear out of nowhere at the time, looking back I can now see the signs. It was a rough summer between graduating high school and starting a competitive nursing program that I wasn’t entirely convinced I wanted to be attending.
There were a lot of firsts, too – my first time traveling away from my family, my first time living alone for a few weeks, and my first time attending college. It would have been a lot for someone without a dysfunctional immune system!
I felt an intuitive pull to do some soul-searching and get to the bottom of this new challenge.
I needed physical distance from my panicked parents, whose own fears and self-imposed guilt over my diagnosis were increasing my stress level.
When I asked my doctor to write a letter to the Dean of Nursing, requesting that I defer my scholarship and acceptance into the program, he didn’t understand why I wanted to take some time off to grieve. As is true with many medical professionals, he believed my condition should be easy to treat with medications and that I could continue with nursing school as planned.
Less than six months after I was diagnosed, I was anemic, anxious, and underweight and told that “it must be nice to eat whatever you want!” I laughed at my symptoms to put others at ease, but was in constant pain and fear.
The truth was that I needed to figure out more than just how to treat my disease. I needed to figure out how to live my life.
I needed to figure out what my future looked like with the uncertainty of a disease that may or may not ever be in remission. So, for six months I lived 1500 miles away from my family and hunkered down for a winter to do some soul-searching.
Here’s what I learned was helpful to cope with a major life change:
- Take a break (I pressed pause on life in every way possible.)
- Grieve (I wrote in a journal, talked with friends, and meditated on spiritual things.)
- Let go (I released attachment to my previous vision and allowed a natural course to unfold.)
- Breathe (I remembered to turn inward and tend to my thoughts and feelings as they arose.)
- Accept (I found ways to modify some of my plans while making room for new goals.)
Like a butterfly, I emerged from my self-imposed cocoon with a profound new outlook.
I returned home with a renewed sense of purpose in pursuing my nursing degree. It was no longer to satisfy the expectations of others imposed on me, but I decided that I could use my education to help others in my same situation. That is what I have been able to do now for over a decade as a registered nurse and as a coach.
If you’ve been dealing with a new diagnosis, how has it affected your life, relationships, and goals? Feel free to share your thoughts in the comments below.
My Self-Caregiver Journal
A free digital resource with four exercises designed as a foundation for healing. Explore how your feelings, thoughts, behaviors, and symptoms are all connected.