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When Doctors Say Your Symptoms Are 'No Big Deal'

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I have severe respiratory problems, so much so that I am technically in chronic respiratory failure. My breathing muscles are incredibly weak. I was accused of not trying on my last pulmonary function tests because of how poorly I did on some of the tests.

It’s not that I wasn’t trying. I was trying so hard that my ribs ached afterwards for days. I just really can’t breathe!

I had these problems for two years before I was taken seriously. Two years. Think about that. Imagine feeling at best that you can’t breathe after climbing a few stairs, and at worst that you’re suffocating — for years. And not only that, but imagine then not being believed by your doctors, the so-called “experts.”

The pulmonologist I was seeing during those two years acted like not being able to breathe is no big deal. The emergency room doctors and nurses told me to see a psychiatrist to “get my panic attacks under control.”

During that time, I had tests showing air trapping in my lungs and abnormal and diminished PFTs. I was aware of this, my doctor was aware of this, and in spite of these tests I was told “I’m too young” for those to be accurate or important. “It’s probably just asthma.” I had asthma as a child. Being constantly unable to breathe, even at rest, is very different from an asthma attack.

Because my doctor, who’s someone you should be able to trust, didn’t believe me and said it wasn’t a big deal, I tried to tell myself that it wasn’t a big deal. But it turns out that breathing is actually pretty important! And it’s pretty hard to ignore feeling like you can’t breathe.

So eventually, after probably my third ER visit because of not being able to breathe, we switched doctors. I made an appointment with the first available doctor at a different practice, who has turned out to be awesome.

He’s the one who figured out that my issues seem to be coming from neuromuscular degeneration. And even though we still aren’t positive what’s causing it (it looks like it’s most likely from my Ehlers-Danlos syndrome, but we’re still testing for other things), I finally have a doctor that believes me and hasn’t given up on me.

Just because one doctor says your symptoms are “no big deal,” that doesn’t mean that’s true. There’s a bit of a difference between chronic respiratory failure and asthma (both are awful, but they’re very different conditions to treat)! If the symptom is a big deal to you, if it’s a big enough deal that you went to see a doctor about it, then you deserve to have it looked into thoroughly to not only get answers, but to receive proper care. If I had stopped looking for a doctor who believed me and had stopped searching for answers, I’m positive that I’d be worse off than I already am. You have to be your own biggest advocate.

Getty photo by Rawpixel

Originally published: May 6, 2018
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