Because I am a Zebra you can’t see me.

When I was in the ward, after the ICU, I had a med student who couldn’t see me.

It wasn’t really all his fault. He was taught “if you hear hoof beats, look for horses, not zebras.” The problem is, a Zebra was laying in the bed in front of him, but he couldn’t see me. Through his teaching, and arrogance, he could not see what was right there in front of him, and he could not hear what I said.

I am a Zebra, and have been since I was born. I was the baby that had “failure to thrive”, the child that had so many surgeries that my parents lost count, the adult that forgets large parts of my medical history when I talk to new doctors because it’s just so long, the patient who doesn’t mention surgeries, until a doctor looks at my abdomen and says “what are these scars”, the patient whose family doctor still can’t remember or pronounce the name of the large surgery I had when I was 3, the patient whose blood levels are always wonky, and the patient who so often reacts unpredictably to medications.

I look healthy on the outside. I always have, and sometime I’ve felt healthy. On the inside… Let’s just say I always notice that moment when ultra sound technicians notice the differences in my organs. Their eyes get bigger, and they quit small talking. When I asked what’s wrong, they say they can’t tell me.

I like being unique, because being unique on the inside, allows me to be unique on the outside. It allows me to take my own path and not follow the crowd, because I can tell myself “I’m not like everybody else on the inside. Why do I have to do what everybody else does?” It gives me extra freedom.

But it also makes me invisible.

In the ICU they believed how different I was.

In the ward, after the ICU…

Try telling a med student that you need a certain type of medication that he hasn’t heard of. Try telling him that the blood tests he took may say my kidney’s are fine, but I know that they aren’t. I know that I’ve had more tests than he can imagine, that although the blood tests look good, my 24 hour urine tests, will show that I’m urinating everything out because my kidneys no longer know how to filter.

I’m sick. I crashed in the ICU just 5 days ago. It’s -45C outside, and nobody’s car is starting, making visiting me very difficult. I don’t have the verbal support of my family, but I know my kidneys aren’t doing well, because he has deprescribed a medication that is rare, but that I need, and he insists that he “knows everything there is to know about kidneys”, and my kidney’s are fine.

My body is so different, that it can’t even do kidney disease right, making me need to take medications that most people with kidney disease have to avoid in their diets. To find the medication I needed, I needed someone with a Phd in community pharmacy, to find a company that would provide it to my pharmacy. The nephrologist prescribed it, I took it to my pharmacy, and they sent me to somebody else.

I might not be a doctor, but I know my body. I know how I feel when I don’t have the medication I need. I’ve done the research, I’ve talked to the nephrologist and the Phd pharmacist, and I know what I need.

The clock might have been going backwards at the time, but I knew that wasn’t real, and I knew that I was getting weaker and sicker as the hours progressed because I hadn’t had the proper medication in 3 days. I knew the name of my nephrologist, the name of the transplant pharmacist, and the name of the community pharmacist. If these were all delirium induced hallucinations, how could I have come up with the right terms and names?

How could I have explained complicated satistics about a bell curve, and not everybody is on the bell curve, and I’m one of them? Honestly does anybody who doesn’t understand this stuff come up with it because of delirum?

But he stood at the end of my bed and said “I know everything there is to know about kidneys, you’re kidneys are fine, and I don’t have to phone your nephrologist.”

If he knew everything there was about kidneys he’d be a nephrologist. He didn’t even know how the bell curve worked. He acted like he was the doctor, I was stupid, and I should trust him in everything.

But that’s not true. First, if we were back in my number theory classes, he wouldn’t have been able to follow. He’d be the person who knew nothing.

Do not think that just because somebody doesn’t have the knowledge that you have, that you are smarter, better and infallible?

Second, he couldn’t see me, because he was taught to disregard every zebra he ever met. To him, everybody’s a horse, and if someone tells him differently, they are lying.

Third, his arrogance, didn’t allow him to even learn about zebras. He will never be able to see zebras, because he’s too arrogant to ever believe that somebody might possibly know more than him. He will never learn, because he’s not open to learning. He thinks he knows everything.

I find myself hoping that he failed medical school miserably, never made it to residency, and will never be able to hurt other patients, like he hurt me.

I finally got him to listen in 2 ways: one my mother told the nurse which pharmacist to phone to confirm my story, and two I told him if he cost me my one remaining working kidney I would sue him for everything he had and make him never become a doctor. I told him I didn’t owe him a kidney.

I got the medicine I needed the next day.

But why did it have to be such a fight?

Please, if you are a med student, resident, or doctor, never discount what your patients are saying? It’s not suppose to be an adversarial relationship, in which I have to fight for what I need, and you act as a gate keeper, to all the gold.

Why can’t it be a teem effort? Why can’t you believe me when I say I have something rare? Why can’t you see me?

Please try to see me?

If you are a med student, resident or doctor who does believe you’re patients, and works as a teem, thank you.

Never underestimate now much that is appreciated, by Zebra’s like me.

If you are a professor of med students and residents, please teach them that Zebra’s exist?

And if you are a med school curriculum designer, please take that old and horribly wrong adage out? That adage is harmful and it needs to be changed.

How about “If you hear hoof beets, look for horses. If you don’t see horses, look for Zebras.”?

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