System Malfunction: When Your Brain Hits the Brakes and Nobody Notices

Navigating idiopathic intracranial hypertension, anxiety, and the healthcare system’s blind spots

I am feeling a lot of things this morning. Working on school is a chore when my brain will not stay on the information I am trying to learn. It feels like it’s time for…

The Check Engine Light.

This post is going to be an emotional brain dump. I just need to get things out. My way of thinking likes to map like a web of constellations, not in a linear line. Writing helps me process, organize, and reset.

Check Engine Light: Emotions are High, Energy is Low

My emotions are like the RPM output of an engine. However, the speedometer shows that I am still only going 20 mph.

And this is why I use car references for my categories. It just fits.

Think about it. A human being is a complex system of organs, veins, nerves, with a brain that manages the whole system. Cars are not much different. A frame for a skeleton. They have wiring, hoses, and different parts for different functions. Then you have the master controller as the engine. It makes everything do what it should. So does the brain.

My engine seems to be dysfunctional. I have too much oil pressing on the internal parts that control my system. So, they misfire and malfunction without obvious causation.

That causes some big emotions, too.

It feels torturous to live life never knowing what will malfunction from one day to the next. I just keep trying to press forward. All the while, trying to respect those moments when my body presses the brake. Then my system stalls, and I have to force it to restart. I’m sitting at a green light with people honking behind me. They don’t know why I stalled, just that I am wasting their time.

I’ve had a couple of specialists insinuate I am wasting their time. They are the car directly behind mine, slamming that horn like it will produce money with each press.

One let me go because “there is nothing wrong.” He said that I just needed weight loss surgery to solve all my problems. When I stated that I have been working on natural weight loss? He essentially told me that he is expensive. He believed it was a waste of money for my insurance to move forward.

Polite? Yes. That doesn’t mean he was nice.

After a fall that created intense symptoms related to another specialist? Well, I made an appointment to explain what happened. I wanted to see if it would affect the original decision.

Four words into my explanation, he cut me off to ask, “What do you want me to do about it?” Feeling a little dumbfounded, I tried to explain the situation. He simply cut me off again. He explained to me that he thought I “understood.” He insinuated I was wasting his time.

When I couldn’t take another word, I told him I was leaving. I was sobbing, of course. I requested a referral to a different hospital network.

He wanted to do an exit exam. I told him in no uncertain terms to keep his hands off me and left.

That one ended with a patient relations complaint about the doctor.

I draw a line at being treated like dirt.

My pain is real.

My distress is real.

I am allowed to feel anxious and ask questions. They’re supposed to listen and respond from an educated standpoint. I didn’t go to medical school, they did.

Unfortunately, I have learned over the last two years that medical gaslighting is prevalent. I am so disappointed by that. Many medical professionals (not all) devalue your symptoms if you don’t present with a textbook problem or an easy solution.

After that last example above, I started having medical-related anxiety. I had panic attacks with every doctor appointment. I didn’t believe I would be heard.

Many proved true to that statement. Some did not.

I had one specialist explain that he believed I was struggling, but he couldn’t figure out why. He was kind, considerate, and explained his own struggles with misconceptions. Being a minority, he faced a lot of hurdles just trying to live his life, too. He wanted me to know that he believed me, but he couldn’t answer my questions. He wished he could.

It is okay to not know. Admit it. He was great about expressing his frustrations about not being able to help!

Most, when faced with no clear answer, reflected that frustration back as gaslighting. It was easier for them to believe I was lying. No one likes to admit they are wrong, even medical professionals.

Shout out to the other medical professionals who treated me like I’m human. I’d say 50% of the doctors I have seen are decent. It should be more.

I woke up this morning determined:

I am determined to not let this neurological disorder beat me.
I am determined to pivot as needed to keep crocheting, while pacing myself to accommodate for eye strain.
I am determined to continue writing self-mentoring printable guides and my e-books. I will do so unless IIH forces my eyes to stop working.
I am determined to continue my education until I can no longer continue.
I am determined to continue finding joy in life, even when it seems impossible.

I look forward to living with idiopathic intracranial hypertension and not suffering from this neurological condition.

I won’t lie, it feels like a cruel joke from the universe. I already lived with anxiety and major depressive disorder. It is like the universe thought:

“She already struggles with her mental health? Hold my beer, and let’s give this anxious, sad woman a compressed pituitary gland to increase those symptoms. Let’s also make the disorder something most doctors don’t see during their time practicing! She’s already morbidly obese? Awesome! This will also slow down her ability to lose weight, causing weight gain with ease.”

Either that or I am the world’s toughest woman. A rare gem that can handle a hurricane of struggles without missing a step.

Am I the only person who wishes life came with a universal remote? Just to pause existence and breathe between every 100 mph wind gust?

Key Search Terms

If you found this post by searching symptoms, medical frustration, or trying to understand what it feels like to live with idiopathic intracranial hypertension (IIH), thank you for landing here.

You’re not alone.

This piece is more than just an emotional brain dump—it’s a glimpse inside the engine of someone pushing through chronic pain, mental health struggles, and systemic gaslighting with grit and grace. I hope this post brings validation, relatability, and a moment of peace in the storm you’re weathering. Keep going. You’re doing better than you think.

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