May 23 • 13M

Misdiagnosis, Nocebo, and Two Poems

My recent experience of being misdiagnosed with an incurable condition and the lessons I learned from it.

 
1.0×
0:00
-13:27
Open in playerListen on);
Fiction, psychedelics, big ideas, and a space to explore the future of storytelling, the intersection of books and technology, new words and worlds, as well as shifts in language via the work of author Charlotte Dune.
Episode details
Comments

Introduction:

Have you ever experienced the repercussions of a lie that amplified in your own mind?

Let’s call this lie a nocebo. A nocebo has a negative psychogenic (mind-to-body) impact. With the nocebo effect, your negative beliefs and thoughts cause physical harm to your body.

The nocebo could be a lie someone else told you, or maybe it was a story you told yourself, which later proved false, like a limiting belief.

A doctor recently misdiagnosed me with an incurable and life-threatening condition. The entire experience from start to finish caused me to reflect deeply on the power of my own mind, especially when bolstered by authority from the outside.

I’m sharing these details to encourage everyone to seek second opinions in any medical matter, even if the first opinion seems highly likely.

I’ll also share two poems I wrote during the time period to cope with the diagnosis. If you want to skip to the reflection and the poems, just go to the end.

The Problem: Round One

Around age 37, I experienced unusual fatigue. At first, I chalked this up to aging and having to get up early to take my daughter to school, but after talking to other women my age, I started to think something was actually wrong with me. The fatigue would hit around 3-6 pm, no matter how much I slept the night before. Off and on, by late afternoon, I’d feel like I didn’t have enough energy to even change my clothes or fix dinner. I was also experiencing rosacea, a reddening of my face. I went to the doctor to check my blood, hormones, and vitamin levels.

The first doctor I went to was my general physician, who found that my blood was normal. He subsequently referred me to various experts including an allergist, a hormone and weight loss doctor, a psychiatrist, and a dermatologist. As you can imagine, I really wanted to solve the unexplainable and debilitating fatigue, as well as my skin issues, so I followed the doctor’s recommendations.

However, each specialist I saw had a different diagnosis and a different solution. Several recommended I reduce my weight (easier said than done) or offered me prescription amphetamines for the fatigue. Others suggested different additional specialists, including a health coach, a personal trainer, a nutritionist, a cognitive-behavioral therapist, and a sleep expert.

My issues felt like a bottomless money pit, and I sort of gave up on fixing the problem and took the prescription uppers to manage the fatigue.

The Problem: Round Two

This situation went on for two years until a series of different skin rashes and eye inflammation sent me back to the doctor. This time I used a new family doctor and an eye doctor. They both thought I might be suffering from lupus and ordered me to get lupus lab tests done as a precaution, just in case.

I’d never heard of lupus before. When I read briefly about the condition, some symptoms matched me, but others didn’t, and it was a very rare diagnosis that usually affected women of color.

Share Charlotte Dune's Lagoon

The Diagnosis

I did the lupus tests two weeks later, not in a rush because I didn’t think they’d amount to anything but a waste of money and time. The doctor explained that if one was positive, they’d test for a bunch more things.

Well, the first was positive for lupus, so they did more tests. The next evening, the doctor called me after hours to say I had lupus. “Don’t be alarmed, but you’re positive for lupus.”

“What does this mean?” I asked.

She explained that lupus is an autoimmune disease that was not curable. Lupus caused fatigue and eye and skin problems, amongst other things, some of which were very serious, like kidney failure. She also suggested I see a nutritionist, to put me on an anti-inflammation diet, and a rheumatologist to get more details. I would need to take certain precautions to make sure things didn’t get worse because lupus could be life-threatening if ignored:

The Lupus Treatment:

  • No sun, ever.

  • No smoke, no cigarettes, no weed, no campfires, no open bbqs.

  • Avoid stress

  • Plenty of sleep

  • Anti-inflamation diet

  • Vitamin D daily.

  • Avoid fluorescent lights.

If things got worse, I would need to go on steroids or even chemotherapy drugs.

I asked, “Are you 100% sure? Like, are these tests definitive?”

She said, “I’m afraid so. It’s definitive. You have lupus.”

There are two main, full-safe lab tests for lupus and both of mine had come back positive.

I hung up the phone feeling so confused. I tried not to freak out as I googled lupus. Then I stopped googling lupus because I was freaking out.

The Freak Out:

For the next four weeks, I waited to see the rheumatologist for more tests and details on the extent of my lupus. I walked around in a haze of anxiety which fluctuated between low-level/distracting to the occasional full-blown panic attack. I had an auto-immune disorder, or so I believed, that was quietly eating me up inside. How much damage had it already done? The thought was very disturbing; it felt like I was a computer with unremovable malware installed.

I stopped going to the beach (I live in South Florida) or even going outside during the day. I changed the fluorescent lights in my kitchen, avoided smoke and gluten, and read and watched disturbing personal accounts of lupus online.

It was a terrible month and I didn’t get much else done. People around me, including a doctor, speculated unhelpfully that I’d triggered the latent lupus with Covid or the Covid vaccine. These suggestions really pissed me off and made me feel like the lupus was my fault.

Leave a comment

The no-sun part, and the idea of unending fatigue, and not being able to travel or be productive with lupus depressed me. 80% of people with lupus were unable to work.

As the days progressed, I experienced even more, and new, lupus symptoms, like numb limbs and cold toes.

Every time this happened, I freaked out harder. I’d never had such intense anxiety in my life.

Finally, a close friend introduced me to another woman with lupus. Talking to her calmed me down a bit and gave me hope. I tried not to think about the lupus, and began to accept the situation.

Yet, I could not accept it. While my symptoms matched lupus, there was a 3-5% percent chance that the two main lab tests were false positives, and I just did not want to believe that I needed to avoid the sunshine for the rest of my life.

I also noticed that everyone I encountered with lupus seemed to be bone-thin. I am not at all bone-thin.

So I paid out of pocket for a second opinion and another round of all the lab tests with a highly recommended rheumatologist. And I waited an agonizing two weeks, where I kept telling myself that I shouldn’t count on false hope… that I probably had lupus… that my doctor had said I 100% had lupus…

The Misdiagnosis

First, the lab results from my regular panel of blood and urine came back totally normal. I relaxed a little. Even if I had lupus, it wasn’t doing much damage to my insides and I was in a fairly dormant state.

Next, I went to the specialist to receive the final verdict and the 2nd round of all the tests. When I first arrived, she said none of my labs were back, though it had been two weeks since I tested. I was devastated. I needed answers!

Sensing my despair, she offered to let me wait in the exam room while she tried to call the lab and track down my results.

An hour later, she returned and told me I was 100% negative for everything. They had done $1500 dollars worth and four pages of detailed lab tests at America’s number one lab for lupus in California, with a special panel called Avise, the world’s best lupus test, and I was negative. I didn’t have lupus.

“Go back to your normal life,” the doctor said.

“What about the symptoms?” I asked. “Like the rash.”

She shrugged, “See a dermatologist.”

I left the office in a tornado of emotions as equally intense as the first time the doctor had told me I had lupus, except now I was extremely relieved and happy.

What a mind-fuck the whole thing had been.

I also felt like a fool, and systematically updated everyone I’d told about the lupus.

One friend asked, “Are you going to do a third test to confirm the second one?”

The answer is nope; I can’t bring myself to go through this again, and the 2nd test seemed more reputable than the first.

The Reflection

The mind is a powerful thing, and so are medical experts.

I was told by an authority figure that I was at risk of experiencing serious damage from a life-threatening disease, and my entire body, outlook, and habits suddenly changed drastically.

All it took was a factualized threat (a threat supported by unverified facts that sound true) to spiral me into non-stop fear.

Sound familiar?

With the nocebo effect of the misdiagnosis, my body even generated extra lupus symptoms and my health anxiety kicked up, and all… for nothing. My own stress and worry probably caused more harm than lupus would have in the same time span.

Every doctor I saw gave me a different diagnosis and a different treatment.

My trust in doctors and even lab tests reached an all-time low.

During the experience, I also learned about the power of placebos, which is a positive-thinking-based treatment— the opposite of the harmful nocebo effect, which I did to myself via negative thinking. I could have easily just imagined I was healthy instead of chronically ill.

And I learned the value of second opinions. You see, two doctors only give the same diagnosis to the same patient 12% of the time. 88% of patients get a totally different diagnosis when they go to a second doctor. This is something I would have never guessed, having not experienced it myself.

Leave a comment

A Final Word and Two Poems

Having lupus wouldn’t be the end of the world, but I’m certainly glad I don’t have it. And I feel deep empathy for anyone who does, as it’s an underfunded, underresearched, and very life-disrupting condition. There is no cure, and much more research into treatments and support for patients needs to occur. If you’d like to support people with lupus, please check out the Lupus Foundation.

While I’m back at square one, wondering what is causing my fatigue and skin rashes, I’ve been tested for everything, so the answer is, “No one really knows.”

I can tell myself that situps or liver or whatever I want cures fatigue, and my situation might improve. The placebo is as effective as the nocebo.

So, stay positive folks, and I’ll just keep taking naps, going to bed early, trying to lose weight, and writing poetry when I need to cope with negativity.

Have you had a nocebo or placebo experience or a misdiagnosis? Let me know in the comments.

Enjoy these two poems I wrote while I was convinced by a doctor that I had lupus.

Share

Lupus I

Lupus, a wolf
But I feel more like prey
Always pray
I'm not eaten today.
Please don’t bite.
There are two of me inside me now
But not two wolves
like the meme
life is a parody 
but a predator
and a prey
a broken machine rabbit
the kind another robot would repair in the movies
on a metal operating table
with steam and smoke and bolts, drills
But who will mend this internal contraption
the veins and wires like weeds
the stray pollen and dying seeds
of the creature who hops in the grass
aware of being eaten
by that which is meant to tend
all along its path?
Prey always pray not to be eaten today.

Lupus II

Lupus, many Beetles
Japanese beetles
Shields like robotskin
Roboto, Berserk, Naruto
My daughter talks nothing but Manga
An invasion unlike the trees
and leaves dotted by the green-shelled insects
It’s a pleasant submersion
As I dip my head in the heated water
The bugs float in the hot tub with me
in the night film of stars
Like my own immune cells
They’ve been left to drown in the liquid
Confused
Unstable carbon
Shinigami death God
Looking for unlikely food
A colony, a swarm, a troop
Not an invasion, but a coup.

Thanks for reading Charlotte Dune's Lagoon! Subscribe for free to receive new posts and support my work.

Read Charlotte Dune's Lagoon in the new Substack app
Now available for iOS