From Health to Despair: One Patient's Odyssey Through US Healthcare

Part 1 of The Battle for Justice: 'Sickcare' vs. 'Health-Owners' Series

This will be a 5-part blog series, reflecting on one patient’s experience and unraveling the complex and mind-boggling factors surrounding American patients. I aim to shed light on the extent of US healthcare troubles, explore the reasons behind the current state, and, ultimately, challenge you to rethink healthcare and consider doing things differently. 

Tracing Jack's Path Through the Healthcare Maze

As a professional patient advocate, I encounter various patients and families grappling with their healthcare challenges. Among them is Jack (not his real name). Here is his story, constructed based on my observations, his medical records, and his descriptions of past events.

Just over a decade ago, he was a healthy, productive member of society with an active lifestyle. One day, he was bitten by an insect and got a rash. It became so large several days later that he saw a doctor but couldn’t remember the treatment. 

After that, the rash subsided, and he went on with his life... Then, a few years later, he fell off a Bronco ride. 

Unexpectedly Becoming a Chronic Condition Patient

Though his physical injury healed, Jack began experiencing strange symptoms – excessive sweat, blurred vision, and ringing in the ears. Despite consulting multiple doctors at premier hospitals, none could provide answers.

However, the doctors were eager to run a battery of tests and even did a vascular procedure that he didn’t understand why he needed them (he had good medical insurance). 

Unfortunately, the procedure didn’t go well. He recounted witnessing his blood splashed around, the doctor upset, and lingering pain almost a decade later.

In the meantime, he did research and concluded that he must have Lyme Disease. With this knowledge, he mustered the courage to seek help, but again, he couldn’t find any doctor to help him. Instead, he was dismissed and even gaslit by some doctors (Chronic Lyme Disease is extremely difficult to treat).  

Desperate Measures, Including Medical Tourism

He developed a profound distrust of the US medical community and traveled to Europe to get some care. He received some medications via mail from his European doctors occasionally but never set foot in a US medical facility for years while his symptoms kept worsening… 

Jack's symptoms became extensive, physically (e.g., profound fatigue, blurred vision, ringing in the ear, hot flushes, joint pain, headache, and the inability to stay upright for long) and mentally (brain fog and depression). But one day, he discovered private patient advocacy. Also, he remembered one doctor he met many years ago and felt he could trust. He asked me to facilitate and accompany him to this doctor, which wasn’t far from me.

I was excited to help him, but cruel timing has it that the doctor had passed away just a few months prior! I researched other doctors who could help him, but the best ones were far from us. Unfortunately, his resources had been depleted by that time, and he could no longer afford to pursue better care. 😭

Disabled and Feeling Hopeless

Sadly, Jack’s story isn’t all that unusual. I’ve heard other similar horror stories firsthand from others whose conditions got worse and even traumatized after seeking care.

I’ve been wondering why this had to happen and what he and other patients could have done differently. I will explore these questions in this series.  But I will leave you with some questions for reflection until next time.

• "How much trust do we place in our healthcare system, and is it always justified?"

• "In times of medical crisis, are we too overwhelmed to question the treatments suggested to us?"

• "Could a better understanding of our healthcare rights and options lead to more empowered decisions?"

• "Are there instances where the healthcare system prioritizes profit over patient welfare?"

• "What role does patient advocacy play in navigating complex medical situations?"

• "How often do misdiagnoses occur, and what are the consequences for patients like Jack?"

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Next week, in Part 2, the focus will shift to a broader exploration of the American healthcare system, dissecting the underlying reasons why the system seems to fail patients like Jack.

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About Kayoko Corbet, RN, BCPA

Hi, I’m Ky! I assist people in navigating the healthcare maze and complexities to get the care they need and deserve with full benefit. I also help people better manage their health to have a better future.

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