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Constantly Riding the Diagnosis Merry-Go-Round When You Live With Chronic Illness

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After my lupus diagnosis almost six years ago, people asked if it took years to get that diagnosis. I said no, that I was surprised by it. But when I looked back, I realized that that was not true. For many years I had made numerous comments and complaints to doctors, family and friends.

As a teen, things happened to me that should have prompted a trip to the emergency room or at least the clinic, but instead I was told to stop being a baby and suck it up. I complained of being tired, I sometimes fell asleep right in the middle of the floor, I had very heavy cycles, anemia, migraines, aches climbing stairs and unexplained fevers that would show up out of the blue and disappear just as quickly. Even a heat stroke didn’t win me a trip to the doctor.

My first completed pregnancy in my 20s included a lengthy hospital stay with pre-eclampsia. The specialist called in to take care of me was unable to determine the real cause of my issues. He specifically said, “You must have some problem with one of your organs, but I can’t find it.”

I would get strange rashes on the backs of my legs after being in the sun. Vacations would start off with big plans that had to be cut in half because I could not stay awake no matter how much caffeine I consumed.

Pleurisy was a come and go thing that absolutely no doctor took seriously, or my IBS for that matter. Finally, there was the nasty bout of walking pneumonia with no discernible cause. It wasn’t following the textbook definitions for either viral or bacterial pneumonia, but there it was in all its colorful bloody spew.

Throughout those decades, a doctor here and there would make a statement like, “Hmm… I wonder if something else is going on here.” And when I would ask, “What do you mean?” They would look away, stare at their notes in silence or change the subject.

I was left with the belief that it was all nothing, normal, insignificant and that all I could do was carry on like any other healthy person. After all, I was a woman, a mother, a homemaker who needed to suck it up and put my family first in my life ignoring my own needs. That’s what was expected.

It was a headache, the worst ever, that finally landed me in the direct path of doctors who could no longer ignore the nagging little flags here and there. This one was big, very big. It was a brain bleed.

But that doesn’t mean I was off the diagnosis merry-go-round. Oh, no.

It wasn’t too terrible a ride at first. At least I was finally on it being seen. There was no more doubt that something was terribly wrong. Yet, I still heard a lot of, “I don’t know what’s wrong with you. The tests don’t show anything. Next!”

It took another bleeding out before some real testing happened with real results.

“We got it! It’s lupus! We can start treating it! You’ll be fine! Eventually.” That last word was more of a whisper.

So, I believed that was it. Lupus and two blood disorders. We can call it quits on ignoring nagging symptoms. Some medication and monitoring and everything will be fine.

Not so fast…

Pain didn’t stop. Back on the diagnosis merry-go-round. Is it still lupus? Is it another autoimmune disease? Is it the medication? “I don’t know. Tests look good. I can’t help you. Next!”

Finally, fibromyalgia diagnosis. OK. Back off the merry-go-round and on to treatment which has gone quite well for the most part. This is good. We’ve got it all figured out.

Not so fast…

I just got pulled back off that damn merry-go-round yesterday for lower back and leg pain that just would not go away no matter how many doctors I saw and treatments I followed. Even the physical therapist trainees working with me agreed that most of my doctors were seeing “woman, fibromyalgia” on my charts and were chalking it up to a complaining female probably drug-seeking. I was getting sick going round and round and round.

It took a new doctor, a neurosurgeon, to take a look at all the information, not just the opinions of others but the actual images with fresh eyes, to grab me by the hand and pull me off it.

“The radiologist’s report on the MRI is wrong. That degeneration to your L5 is not minor. I would say it’s pretty bad.” Oh my God! The relief! He knows! Someone knows!

I cried…

And then I laughed. I don’t like merry-go-rounds.

Getty Image by VictorHuang

Originally published: March 23, 2019
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