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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.

When the COVID-19 pandemic hit last year, I was scared, but having been unable to leave my home due to illness for many years, not much changed for me. And then it all did.

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.

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