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When I Finally Found a Doctor Who Understood My Pain

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I knew something was drastically wrong me on the Friday before Mother’s Day. I told my son to call an ambulance. The house seemed to spin around me. The pain was excruciating. Then my face drooped, and I couldn’t see very well. I couldn’t feel my skin or muscles. My right arm and leg felt like unwelcome useless dead logs, and the right side of my body seemed like it no longer existed. 

I could see my arm and leg, but nothing would move. My brain exploded in pain like nothing I had ever felt before. I thought, “This is it. I’m having a stroke. My kids are standing next to me watching their mother die.” The ambulance came, and the kind folks took me to the hospital.

I was released with the diagnosis of migraines. No stroke. The feeling in my arm and leg came back after seven hours, and I was able to walk out of there.

Then on Mother’s Day, it happened again. But this one was worse. I faded in and out as the pain in my head shot through my body like lightning strikes. This time, the ambulance took me to a bigger city hospital. The ER neurologists did all kinds of scans with dye and gave me something for the pain, which came back as soon as I started feeling anything on the right side of my body. Talk about nerve pain.

When the neurologist returned after all the testing, he told me, “You didn’t have a stroke. We can’t find anything wrong, so you can go home now.”

I lost my cool. I said with my half-functioning mouth, “You’re going to seriously send me home without an inkling of what is happening to me. Not to mention, I can’t use half of my body!”

The rest of the team came and said, “Well, we can’t find anything medically wrong.” So am I imagining this? So am I lying? They admitted me — reluctantly — to the observation wing, and I stayed there for 10 days while they continued to push me to go home. And without the correct diagnosis.

The doctors and nurses visited me on the observation floor. Teams of students surrounded my hospital bed. Psychiatrists and their gaggle of interns told me they think I have conversion disorder. That’s where your body tells itself it’s experiencing health problems, and they’re real to you but nothing can be pinpointed medically.

Because there was no diagnosis, the nurses thought I was just looking for pain meds. Or faking it. I was overlooked. I can’t tell you how many times I lost urinary control after pushing the nurse’s button, and no one came to help until 45 minutes later.

I refused to go down that route without a battle. 

I refused to accept the diagnosis of just a migraine.

I refused to accept the diagnosis of conversion disorder.

I refused to be silenced. 

Something was wrong with me, and I wasn’t imagining it!

After I was transported to a nursing home for 10 days, I begged my trusty female doctor to find me a female neurologist. In my experience, some male doctors just don’t show enough care for me.

A week later, I got an appointment with a female neurologist. She reviewed all my hospital stays and declared, “You definitely have hemiplegic migraines. It’s rare and the worst kind out there.”

Oh, the glorious relief of knowing. Knowing that a doctor figured it out. She understood my pain. She knew the condition and empathized with me.

Things could’ve been better if the other neurologists thought outside of the box. Doctors and nurses, I know your jobs are difficult. I see how harried you get during the days and nights. I can’t imagine doing your job. But just show some empathy next time. Check rare conditions a little more deeply. It just might make me or someone with an invisible illness smile again.

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Lead photo by Thinkstock Images

Originally published: November 29, 2016
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