When Medical Tests Don’t Find a Cause
/By Crystal Lindell, Columnist
One of the things doctors always tell you is that it’s really, really good news when a test comes back all clear. When nothing shows up on the MRI, bone scan, ultrasound or blood work -- that’s a good thing.
But let’s be honest. It sucks.
As a chronically sick person, I find I go through phases. There’s the “Let’s try every treatment and get every test” phase, which is usually followed by the “Everything and everybody sucks and I’m never going to get better so I should just kill myself” phase. Then comes the “Okay, I’m in a good place again, let’s see if we can fix this” phase. Repeat for infinity.
I recently started dabbling in the “Let’s try every treatment and get every test" phase again, and it’s meant seeing new specialists, trying new treatments and getting more tests done.
But, as per usual, nothing ever shows up on any of the tests. And it is the most maddening feeling when you see that your upper abdomen is again declared healthy by a machine that knows nothing about the you, especially when being touched by said machine was so excruciating that you had to push the tech away mid-test.
I’m coming up on my 5-year pain-niversary soon. That’s half a decade now that I’ve basically lived my life feeling like I had a broken rib — about 15 percent of my time on earth spent feeling mostly like I’m actually in hell. And nobody seems to have any idea why.
My primary care doctor, who I love, recently told me he sometimes finds himself sitting around contemplating my situation and wondering what could have possibly caused such a random pain in a random place. My doctor. Who works as an internal specialist at a university hospital. This is the man who has literally no idea what is wrong with me.
And something is wrong with me. I wake up most days feeling like a cinder block is crushing my ribs and I can’t take showers without also taking hydrocodone. I plan my life around when it’s going to rain, because rain makes the pain feel like a semi-truck covered in butcher knives crashed into my right side. And I can’t wear any bras that have even a hint of underwire.
But despite all that, nothing ever shows up. Ever. My bones are healthy. My liver is healthy. My bile ducts are healthy. My blood is healthy. My muscles are healthy. Everything is always healthy.
Except that it isn’t.
And all those tests coming back all clear are enough to make you think you’ve lost your mind. Is it possible to literally imagine crushing rib pain? Have I actually made it all up in my head? Is this all just some sort of awful illusion?
Even my doctor doesn’t seem to know.
So in addition to the painful and expensive treatments and the daily toll of pain, I also have to deal with the psychological burden of constantly reminding myself that, yes, I am sane and yes, all of this is real.
It’s exhausting.
And if my calculations are correct, based on life expectancy and my bad luck, I probably still have many half decades ahead of me filled with the same thing.
You learn to cope. You learn to manage. You learn how to avoid flares. But it doesn’t get easier. The pain doesn’t get less painful. It’s always there, like a raging siren only you can hear — on repeat for infinity.
Which is why the most important thing you can say to someone in pain, any kind of pain, is and always will be three simple words — I believe you.
Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.
Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.
