Why I Cry When My Medical Tests Come Back Negative

For the average person, the time waiting for test results might be spent worrying they could have a serious disease. I spend this time holding my breath for any diagnosis to give me the answers I have been looking for.

My journey began in 2015 when I started to struggle with digestion and pain while living abroad. After months of having no luck with doctors, I returned home to Australia assuming this would be the way to find answers. 18 months, numerous doctors, countless tentative diagnoses and unsuccessful treatments later, I am in more pain and unable to process most foods. At best, I can get some periods of relief through symptomatic treatment, but my disease always finds a way to outsmart that.

woman standing on a cliff overlooking the ocean
Living abroad in South Africa

The way we’ve been taught to understand disease is that you experience symptoms, seek medical help, receive treatment and recover. I am stuck in a cycle of the first three of those four experiences. I do not recover. I do every test, take the medication I am told, rest every day and follow all the diets you could imagine. I only get sicker.

Words cannot describe the disappointment of a test showing nothing. A positive test, no matter how bad the result, means you have some understanding of the disease that controls your life. It means you might be able to start a treatment to get at least some relief.

After every new test, I wait anxiously for my follow-up appointment. I do nothing else to fill the time because I am too sick to work, lead a normal life or do activities I once enjoyed. When I go back to the doctors and hear once again my tests show I am healthy, this is when I break down.

A negative test means you are no closer to getting any relief. It makes you feel like your pain and your sickness are not real. You lose that little bit of hope that was getting you through the day. You’re right back at square one.

Doctors stop searching for medical answers and start to question your mental well-being. There was a time even I was convinced the illness was “in my head.” I now know better.

I know I am not alone. I know my illness is very real. I know I may not be able to get all the answers, but I will never stop fighting.

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