“We found nothing on the pill camera. Your health is all clear.” Those would be the words anyone would want to hear from a gastroenterologist. I, however, had to resist the sudden urge to hurl my phone into the street. I muttered a “thank you,” hung up, and spent the next several minutes pacing back and forth in front of my apartment, growling and cursing under my breath. I had just suffered another disappointment, and, even worse, I felt like I had flushed away six hundred dollars. I calmed down quickly; after all, I had been repeating this process for over ten years. I suffer from an unknown chronic illness.
The Path of Having a Chronic Illness
Most patients follow a simple path to the diagnosis of a chronic illness. For example, I also have rheumatoid arthritis. I started developing joint pain at the age of sixteen, but I ignored it for about a year. When the pain began to coincide with difficulties in breathing, I went to the doctor. A simple blood test provided the diagnosis. At that point in my life I thought every health problem I experienced could be easily defined and treated. After all, I lived at the cusp of the 21st century. Surgeries that once required the breaking of the sternum could not be done with a small incision and the application of lasers. A few ounces of blood could reveal a person’s entire genetic heritage. Every malady of the body had surely been named, classified, and studied by this point, I thought.
Six years later, I knew these idealistic thoughts to be false. I began to develop gastrointestinal problems including stomach cramps, nausea, and chronic diarrhea. At first these were intermittent annoyances, but once they began to interfere with my college courses and job performance I sought out a specialist. The doctor ran a battery of tests and could find nothing wrong, suggesting that I change my diet. I did. I cut out the foods and beverages that could be irritants, and added more “healthy” fare. My condition only got worse.
Now, over a decade later, my health continues to decline and I am no closer to receiving a diagnosis. I have spent thousands of dollars on doctors who shrugged their shoulders and “treatments” that either did nothing or made me feel even worse. The constant pain of this chronic illness has led to a cycle of depressive states and periods of substance abuse. The monetary cost forced me out of college. I’ve had friends and loved ones fade from my life because they can’t understand why I can no longer do the things I used to do. The anger and despair caused by the pain have pushed others away. When the tests come back inconclusive, I nod in my usual resigned way as I barely listen to the doctor telling me to “give up and learn to enjoy life.”
Is This Sort of Chronic Illness Common?
I am not unique, and I am not part of a tiny group of anomalous patients. The National Institute of Health estimates that there are over 350 million people worldwide who live with an undiagnosed or misdiagnosed illness. I can confidently say, without having met these others, that they want the same things as I: we want to be heard, to be taken seriously. We want answers. We want a system in place that will give us, at the very -least, the right to afford a diagnosis.
–Anonymous, Written via Interview
–