Weird? Strange? No. It’s My Reality

A young child might think a non-green tree is weird.

Let me set the scene.

A virtual appointment with a neurologist, a man I have never met before. This was a doctor my rheumatologist and my neurologist both hold in high regard and wanted me to meet with. For a second opinion, for a different perspective, for a new set of eyes to look at me, my medical history, my test results.

He asked questions, I answered. He looked at my legs over a screen. He asked me to stand and sit and squat and tip toe and balance on one foot. Some things I could do, some I couldn’t.

And after all that, this doctor looked at me across a screen and said, “It’s strange.” (In all fairness, this doctor did refer to my symptoms and labs as strange rather than me.)

I momentarily bit my lip and replied, “I’ve heard worse. Usually I hear the word ‘weird.’ “

This doctor chuckled and said, “Weird works.”

And then I finally did it. I finally had an answer for a doctor in the moment.

“No, weird doesn’t work,” I began. “Because nobody knows what to do with weird. No one knows how to treat weird. No one knows how to help weird.”

A thirty-minute initial consultation with no answers. The doctor needs more time to review my medical history. I need to contact him after an upcoming ultrasound, and then we’ll set up an in-person visit for him to look at and touch my leg.

In the meanwhile, I’m left feeling despondent. 

And still with pain in my leg.

You can click here to read “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’ “ back in 2018.

 

It’s My Illness, Not Me

Sometimes we all need reminders. (I found this message on a sidewalk last month.)

 

It happened again. 

A doctor told me I’m weird.

I’ve written about this before. Back in the fall of 2018 and again in the summer of 2019.

The Mighty published my personal essay “The Hard Realties I’ve Faced After My Doctor Told Me, ‘You’re Just Weird.’

Now it’s winter 2020.

And apparently, from a medical standpoint, I’m still weird.

Here’s the thing. I’ve said it before, I’ve written it before, and I’ll write it again – I’m okay with being weird. I know a lot of people think it’s weird I like to eat leftover Thanksgiving turkey cold and dipped in ketchup. Maybe it’s weird that I always have to sleep with blankets covering me. Some might find the nine rings I wear to be weird.

Weird can be good. Weird can be unique. And special. And celebrated. It tells the world I don’t need to be like everyone else.

Except – when it comes to medicine.

I’m going through a rough time right now. Actually, for the last several months. My rheumatologist referred me to a neurologist in his office. I’ve had two different (unpleasant) tests/procedures. 

One test revealed “muscles abnormalities.” Abnormalities – just a fancy word for weird.

The other test supported the findings of the first test.

But when my rheumatologist walked into the exam room the other day for my follow-up, he told me he had met with the neurologist, reviewed the findings, and in his words, “She says you’re weird.”

“I’ve heard that before,” I replied.

But inside I didn’t say that. In my imagination, a whole other scenario played out. I got off the exam table and started screaming at everyone. 

“Don’t call me weird,” I hollered, enunciating each word.

“Tell me you don’t know what to do. Tell me you don’t know how to help me. But do not f – – -ing call me weird. It’s not me that’s weird. It’s this disease.”

I had images of me standing outside on Wilshire Boulevard, using a baseball bat to whack the street signs. 

The police officers would come. I would admit all my wrongdoing. Take full responsibility. And tell the officers that I was just overcome with emotion. I had been called weird once too many.

Because when my doctor told me I was weird, I knew we didn’t have any more answers. I knew I wasn’t going home with a new treatment plan. 

I live with pain. Each and every day. 

Pain isn’t weird. Pain is exhausting. Pain is depressing. Pain is want-to-pull-the-hair-out-of-my-head upsetting. But it’s not weird.

Stop Calling Me ‘Weird’

Now that’s a weird sight.

What does “weird” mean to you?

I think it’s weird when I walk into Trader Joe’s and find there are no flowers for sale.

I think it’s weird when I’m scanning through the radio stations in the car and hear the same song playing on two different stations at the same time.

You may think it’s weird that I even listen to the radio.

Back in September of 2018, I wrote a blog post after my rheumatologist called me weird.

This week, it’s a blog post about a different doctor but the same adjective.

I met with a doctor specializing in chronic pain management.  I didn’t go into the appointment with very high hopes.  After all the doctors I’ve already met with and all the tests I’ve already had, what could this doctor have to tell me?

Well, she told me that my pain doesn’t follow predictable patterns.

I knew that.

She told me she’s not quite certain what’s going on in my body.

No one really is.

She hypothesized and starting thinking out loud about different tests.  I vetoed the nerve conduction test and electromyography.  I’ve done it twice, and all I can say is it felt like a form of torture.

I stood on my toes.  

I stood back on my heels.

I walked down the hallway.  

I crossed my legs.

The doctor reviewed the results of previous MRIs.

And her conclusion?

I have “weird pain.”

I didn’t agree to a new drug.  I didn’t agree to a test that would involve inserting a needle into my spine.

And I didn’t let the tears flow in that exam room.  

I thanked the doctor for her time, and on the drive home, I cried.

I don’t know why doctors think it’s okay to tell a patient they are weird or their pain is weird.  

I’d like to suggest different adjectives:  Abnormal. Uncommon.  Atypical.  Irregular.

At least those adjectives sound more professional, more clinical in nature.

You can click here to read my personal essay “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’.”

 

Weird Wendy

I am Wendy.  Woman, wife, writer.

I am, in fact, a woman of many “W’s.”

Depending on who you ask and how they feel about me, I may be described (to varying degrees) as watchful, wise, wacky, warmhearted, witty, wonderful.

Ask my rheumatologist, though, and he’ll tell you I’m weird.

To get the full story, click here to read my personal essay, “The Hard Realities I’ve Faced After My Doctor Told Me, ‘You’re Just Weird’,” which was recently published at The Mighty.