When Negative Test Results Aren't Actually Good News

It’s hard to explain to the healthy people around me that when I get the news that the test results were “negative” it’s bad news, not good news. Healthy people seem to hear that and think, “That’s great, so at least we know you are OK.” For a normal healthy person, “negative” test results are good news, because it means nothing is wrong. It means they are healthy and have nothing to worry about. But for someone like me, who is already struggling with disabling chronic health problems, “negative” results don’t mean I’m any better off. I’m already having health problems, whether we can find a cause or not. So when I hear that the results are “negative” all I hear is that yet again we have searched for answers and come up empty handed.

I’ve been chronically ill for years, and I’ve learned that doctors expect to find something in your labs. I’ve seen doctors dismiss me because my lab work is fine, so clearly nothing is wrong with me.  I’ve had doctors tell me I’ll feel better if I just diet and exercise, because clearly my health problems are all the result of my own lack of effort.

 

You see, in the real world, doctors need test results to find answers. So what do you do when it all comes back negative?

I keep hoping, maybe just maybe we haven’t tried the right test. Maybe the next set of x-rays will show something. Maybe the blood work will have something wrong. Maybe the EKG will show something. But again and again, nothing.
And I start to wonder, is it all really just in my head? Am I imagining the disabling pain? Do I just need to push harder to get through the fatigue? Am I doing something wrong?

Yet time and time again, when I seem to be on a good path, when I’ve finally had the energy to work on preparing healthy food, when I’m actually in a good rhythm with my exercise: that’s when my bad health strikes. That’s when the shooting pain comes out of nowhere. It’s when I finally think I might be able to break free that my body hits with a deafening blow.

And I think, surely they will find something this time.

It may sound strange to the healthy, but my fibromyalgia diagnosis was actually one of the worst diagnosis I could think of. Because fibromyalgia is a life sentence. It means I’ll be in pain and struggling against fatigue for the rest of my life. It means I’ll likely never be “normal” no matter how hard I fight. I keep hoping maybe the doctors will find anything curable. Maybe they will tell me I was misdiagnosed, that there is actually something wrong that can be corrected. That maybe just over the rainbow there is a life waiting for me, instead of this constant struggle to just survive.

But time and time again, that hope is shot down. Because time and time again, the tests all come back “negative,” there is nothing wrong — at least nothing they can find. And this is why “negative” test results are discouraging. This is why I break down in tears more often because they didn’t find something, because I desperately hope they could find something, anything, to give me some hope that one day I will be “healthy” again.

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Thinkstock photo by rdonar