Ursula Saqui, PhD shares her tips for overcoming and accepting a diagnosis of a gluten-related disorder.
By Ursula Saqui, PhD
All I could do is cry after my diagnosis.
I often listen to people’s stories of how they were diagnosed with a gluten-related disorder and the aftermath. While everyone’s story is uniquely his or her own, I see many similarities across the stories in that they contain some or all of the five stages of grief developed by Elisabeth Kübler-Ross: denial, anger, bargaining, depression, and acceptance. Experiencing this diagnosis as grief makes sense given the many things people feel they lose such as choice, their social life, and favorite foods.
Kübler-Ross and David Kessler state in their book On Grief and Grieving,their five-stage framework was not “to help tuck messy emotions into neat packages” but they saw the stages as “tools to help us frame and identify what we may be feeling”(p. 7).
Similar to the authors, I don’t want to put your experience into a box. Rather, I hope to show you examples of what others have felt so you won’t be surprised, but rather validated, if and when you feel a similar way.
Denial: One of the first things you may experience especially after a long journey filled with many unknowns and incorrect diagnoses.
Anger: This emotion may be directed at everyone, a few specific people, or even at yourself.
Bargaining: Kübler-Ross and Kessler call bargaining our attempt to find a “temporary truce.”
Depression: An appropriate response to your diagnosis, which often means significant changes and losses in your life.
Acceptance: Not necessarily being 100% okay with your diagnosis but a willingness to move forward.
But the framework of Kübler-Ross doesn’t capture everything. As I listen to stories, I also hear the following.
Thankfulness: A sense of gratitude for what has come out of the diagnosis.
All comments are paraphrased to preserve anonymity.
Kübler-Ross, E. & Kessler, D. (2005). On Grief and Grieving. New York: Scribner.
Ursula Saqui, PhD, is a psychotherapist and President of Saqui Research LLC, a consulting firm dedicated to giving people and organizations the information they need to make better decisions.