The Perpetual Feelings of Doubt That Follow You Through Chronic Illness

An unexpected but unavoidable symptom of chronic illness is uncertainty. It becomes one of the defining characteristics of your daily life: your immediate health, how long it will last, whether medications and recommended diets and alternative therapies are working, if you’ll be able to get a job, go to school, shower on your own, make it up a flight of stairs. All of these things are called into question. You go to bed at night unsure of whether you will wake up feeling rested and comfortable or exhausted and in agonizing pain. You make plans with friends, book vacations and commit to responsibilities without knowing whether or not your health will permit you to participate.

As anyone with a chronic illness will tell you, the doubt extends to your life within the hospital, and how your disease and symptoms fit into your medical appointments and emergency room trips. Doubt is as inescapable for chronic illness patients in a medical environment as it is when agreeing to a social obligation six weeks away. You doubt not only the doctors, but also yourself.

When it takes weeks, months, years of experiencing pain or nausea or whichever symptoms are associated with your disease to actually get diagnosed, you begin to question whether or not what you are going through is “normal.” You begin to wonder if you are overreacting. Surely numerous doctors can’t all be missing the same thing; maybe you were told that it’s “all in your head.”

A doctor may voice their disbelief or laugh when you offer articles from the internet you printed off to help get you a diagnosis or a treatment plan. You may be labelled as “drug-seeking,” “attention-seeking” or a liar.

This inevitably happens in your personal life as well, and following each rude comment or snide remark from someone you thought of as a friend, an empathetic coworker or a close family member, you do begin to doubt the believability of the story you’re telling.

My greatest moment of doubt happened when I was in high school. I was still a year away from being diagnosed with severe idiopathic gastroparesis, so my symptoms (extreme nausea and vomiting, unexplained weight loss, fatigue, frequent loss of consciousness, bloating, lack of appetite) were largely unexplained. My pediatric gastroenterologist had given me a questionable diagnoses of “Crohn’s-like symptoms” to explain my medical predicament to my teachers.

My parents and I anticipated my teachers and principal questioning the validity of my undiagnosed illness, and we were prepared with medical documentation when they did. The group of people I did not expect to question my health were the people I thought of as friends.
I began to doubt the sincerity of people when they told me that they were thinking about me, or asked how I was feeling. I began to doubt the severity of my symptoms; if other people could brush off my health issues without batting an eye, could they really be that bad?

Doubt surrounding my health has been an omnipresent part of my life since symptom onset. I know many other people experience it as well. Even if you doubt yourself, your symptoms, your doctors, your friends or the reliability of your body, don’t give up. Uncertainty is unavoidable, but I’ve learned to manage it by taking it one day, one moment and one task at a time.

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Thinkstock photo via Adam Gault.