The Frustrations of Fighting a Mystery Illness

What about all of the chronic illness fighters who still don’t have an answer? It is great to raise awareness for rare illnesses, but I sometimes wonder how many people are in my situation, searching for answers to chronic, debilitating symptoms without a known cause and without adequate treatment.

I’ve been ill for seven years. Before that I had struggled with an upset stomach, gas, bloating and pain since I was a child. But I’ve been disabled by my symptoms since 2010. I’ve gone to the Mayo Clinic twice, been seen at Massachusetts General Hospital regularly and done dozens of tests, and still nothing quite explains my severe symptoms. I’ve been diagnosed with mild gastroparesis, mild postural orthostatic tachycardia syndrome (POTS), and colonic inertia. But even these diagnoses don’t explain my severe constant nausea, vomiting, fainting, dizziness, confusion, vertigo, pain, weight loss, brain fog, numbness and tingling in my arms and legs, bloating, distention, excessive thirst, chronic fatigue, excessive sweating and inability to eat solid food. I do test after test and visit doctor after doctor, trying to figure out what is underlying and causing my debilitating symptoms, but all my tests come back normal, or close to normal. Medications usually work for a short time and then stop working, sending me spiraling into malnutrition and depression again.

Those of us without answers can’t even blame our illnesses for what we experience daily and why we experience these things. Mild gastroparesis and mild POTS don’t explain my severe symptoms, but since they are in my medical records, ER doctors immediately blame those diagnoses for a flare and send me home to follow up with my PCP despite projectile vomiting right in front of them. I have a great gastroenterologist and a great cardiologist and even they are grasping at straws.

I’m tired of living in this condition. I used to be an elite cross-country skier who trained 21 hours per week, and now it’s hard to even take my service dog for a walk. My body is starving. It takes months to get in to see a doctor, and I don’t have months to wait. In the past the pain of eating has triggered eating disorder symptoms to help me feel more in control of my life, which ultimately leads to less control and I end up needing inpatient treatment for an eating disorder. This time will be different I hope. I am determined to struggle through the pain until I find my answers. Luckily I have an amazing family who supports me through this journey.

young woman smiling in hospital bed with tubes attached to her arm

There is nothing easy about living with chronic illnesses. I just want others struggling with symptoms that have no known cause or treatment to know that I believe you, and I understand how frustrating life with debilitating symptoms can be. For anyone who doesn’t live with chronic illnesses, I hope you can be patient with those of us who do, and remember that the most supportive thing you can do for us is to believe us.

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