When Your Diagnoses Keep Changing
I still remember my first articles at The Mighty. Not only was I still battling many undiagnosed and mystery illnesses, but I was unsure about what my future held. Not much has changed, but at the same time, everything has.
It has been five years almost to the day, and I am still unsure about what my future holds. However, I have finally reached more clarity as to what my life is and is not. I am not my illnesses, but I am chronically ill. I am disabled but I am not my disability.
Over the past five years, I have heard it all. From acid reflux to a hiatal hernia to gastroparesis and chronic intestinal pseudo-obstruction (CIPO). Lately, I hear Crohn’s disease, lupus, postural orthostatic tachycardia syndrome (POTS), Ehlers-Danlos syndrome, spondyloarthritis, and more. I know I am not alone. There are so many of us out there with rare diseases, complicated clinical histories, and a variety of symptoms that lead nowhere.
It was during this time that I finally found a rheumatologist who would listen to me. I had so much debilitating hand and joint pain that I could barely sleep or hold a pen. This doctor listened, searched, and finally, gave me the treatment that many doctors refused. While he said I am not my diagnoses, I still needed them to receive the medical options that would otherwise keep getting denied.
Today I still go to Cleveland Clinic often. I sit here waiting for my IVIG treatment to finally be approved, waiting and hoping that my multiple diagnoses will get me somewhere someday. I do not think I will ever get rid of my feeding tube, and I am OK with that. But I do think I have to keep hoping that my many diagnoses will one day lead to one illness that encompasses all these weird symptoms.
In the meantime, I stand with all my fellow chronically ill, rare disease, and weird symptoms community members. I know we often feel lost, angry, and confused as doctors agree and disagree on what to call us. I know we feel despair as insurance companies deny lifesaving treatment over a misdiagnosis. I know we feel angry at the lack of answers. But I know we keep going because after all, we are not our diagnoses.
Getty image by Deep Green.