“It Felt Like An Axe”: Doctors Dismissed Her Pain For Years Until Scans Revealed Rare Disorder

Thirty-two-year-old Charlotte Chapman-Hart experienced ear-splitting headaches from the age of thirteen, leading to multiple incorrect dietary disorder-related diagnoses. 

It would take eight years before doctors discovered that she had cysts on her backbone and her brain was pressing down on her spinal column.

Despite the pain, she continued dancing ballet during this period and graduated from university with a health and human sciences degree.

She felt like an axe was being driven into her head

Young woman with curly hair wearing striped top and denim shirt, representing rare disorder pain dismissed by doctors for years.

Image credits: c_chapha

“It felt like an axe down the middle of my head,” the United Kingdom’s BBC reported her saying.

“Sneezing and coughing created a huge amount of pain, I felt like my head was going to explode.”

Throughout the harrowing ordeal, her mother would take her to doctors and advocate for her daughter, telling them: “Charlotte will only complain if she’s really, really in pain.” 

But this explanation fell on deaf ears: “None of that was enough for people to do some diagnostic investigation.”

Young woman sitting at a wooden table, looking down sadly at her untouched sandwich, reflecting pain from a rare disorder.

Image credits: Getty Images/Unsplash

Because Chapman-Hart refused to let the disorder affect her lifestyle and she continued dancing, medical professionals blamed her ballet.

“Any time that I was in pain it was like, ‘it’s because you dance, it’s because of what you put your body through,’” she recalled.

The 32-year-old woman was treated as if she were mentally challenged 

One of the cruelest challenges for Chapman-Hart was health professionals treating her like she was mentally or cognitively challenged.

“I think the hardest thing I’ve ever had to face is trying to convince people that I am of sound mind, and that what I’m telling you is the absolute truth,” she said.

This made it difficult for her to convey her suffering to physicians. 

“I told them that I’ve never had an issue with eating. I’m just not hungry. Things don’t taste the same.”

But doctors refused to think out of their collective medical box and all of them addressed Chapman-Hart’s suffering incorrectly.

She learned on short notice that she would be undergoing a procedure that required surgeons to cut into her skull

Close-up of a woman outdoors showing concern, reflecting years of dismissed pain before diagnosis of rare disorder.

Image credits: BBC

Then at the age of 21, in 2014, a medico made a breakthrough. Chapman-Hart described the moment the penny dropped, saying:

The Doctor “turned the monitor round and showed us the scans.”

“It was like, ‘This is what you’ve got, this is how you spell it, this is what we’ve got to do’, and having just graduated, it was just like, ‘Right, park that for a moment, we’re going to cut your head open.’”

She had been diagnosed with Chiari malformation type 1, a condition where the brain pushes down on the spinal column, and syringomyelia, the formation of growths on said spinal column. 

The operation was successful and allowed Chapman-Hart to return to normal life—for a short while at least

Woman in hospital gown resting with man nearby, highlighting rare disorder and dismissed pain in medical setting.

Image credits: BBC

Everything else in Chapman-Hart’s life was put on the back burner while surgeons prepped for an emergency brain operation. For Chapman-Hart, the diagnosis and the purported solution did little ease her mind.

“I was really scared about the nature of it and I did genuinely have a fear of, am I going to survive this?”

A week after she learned about her disorder, she successfully underwent the brain operation which relieved the pressure by removing a piece of the skull. 

By 2015, her life had regained some semblance of normality. But it would not last.

She started losing weight dramatically and was admitted to hospital again

Young woman showing hospital wristband, symbolizing rare disorder diagnosis after years of dismissed pain and medical scans.

Image credits: BBC

Chapman-Hart was forced to stop teaching ballet due to overwhelming head, neck and back pain in the same year.

In November 2018, she started getting thinner again, and by January of the new year, she had shed a third of her body weight.

In 2019, she was admitted to hospital, this time because her organs were failing. 

Leading up to the hospitalization, she had, without her knowledge, been prescribed an epilepsy medication for which weight loss was a known side effect.

Also, the medical bloc had failed her once more: the doctor who prescribed the meds did not check up on her as was required.

The woman’s second visit to the hospital was characterized by dehumanization and fear

Young woman wearing a leopard print fur coat posing against a plain background, representing rare disorder pain awareness.

Image credits: c_chapha

Chapman-Hart describes her treatment during her three-month internment at the medical facility as “domineering” and “dehumanizing”.

Her caregivers allegedly threatened to force treatments on her without consent, which she claims caused her lasting anxiety and PTSD.

“I felt like I was alone and had a lot of people and things to fear,” the outlet reported her saying. 

“All of which were beyond my control to effect. I just felt very vulnerable.”

Chapman-Hart would only learn that the medication was to blame for sudden weight loss in 2020.

Five years after Chapman-Hart’s hospital stay, she suffered a heart attack

Young woman with long hair and glasses on head, illustrating rare disorder diagnosis after years of dismissed pain by doctors.

Image credits: c_chapha

It appears the now 32-year-old is still not out of the woods. In 2023, she suffered a cardiac arrest and was resuscitated by her neighbors. 

While the reason for the episode remains unknown (at least to Chapman-Hart), she believes that a significant part of her medical problems could have been avoided if doctors had listened to what she was saying.

“There’s been a lack of accountability,” she claimed. And while noting that she did not wish to call out those responsible, there is a lot that can be learned from the experience.

“It’s so that we can learn. There’s no funding for research, but we are research. Our lived experience is research – capture it.”

Chiari malformation type 1 is extremely rare

Chiari malformation type 1 is the most common of the four main variants of the disorder and is usually the result of the skull being too small for the brain, according to Cleveland Clinic.

“If you don’t have enough room in your skull, part of your brain, specifically your cerebellum, will grow downward where there’s extra space in an opening at the base of your skull — called the foramen magnum,” the online web portal notes.

Woman in gray robe standing on scale in front of mirror, reflecting on rare disorder diagnosis after years of dismissed pain.

Image credits: Getty Images/Unsplash

According to theAmerican Association of Neurological Surgeons, the condition’s prevalence is less than one in a thousand—and being mostly asymptomatic, when it is diagnosed, it is usually by accident.

Not all cases of syringomyelia require surgery

Mayo Clinic describes syringomyelia as liquid-filled cysts that form on the spinal column and, in certain cases, grow continuously.

Sometimes it causes pain, sensations of stiffness, and deteriorating strength, and it usually accompanies Chiari.

It further notes that not all cases of syringomyelia require medical intervention.

Members connect with Chapman-Hart on her PTSD

Comment by Libet Brown discussing the connection between eating disorder and trauma as a coping mechanism.

Screenshot of a social media post showing a user expressing feelings of not belonging, related to rare disorder pain experiences.

Comment from Amanda Mewse about finally overcoming her eating disorder after years of pain dismissed by doctors.

Facebook comment by Lillill Roslundh describing trauma and eating disorders including anorexia and bulimia since age 16.

Screenshot of a social media comment from The Inner Wild CIC discussing links to birth trauma and prematurity.

Comment from Tina Jane Morris saying That's so true on a light blue background.

Screenshot of a social media comment by Melanie Coleman describing intense pain that was dismissed until scans revealed a rare disorder.

Comment by Mali Mfiki expressing encouragement and persistence amid pain dismissed by doctors, highlighting rare disorder discovery.

Comment by Glady Mae offering encouraging words about overcoming pain and hope during difficult times, with heart emojis.

Comment from Vernalyn Abrigana offering support about pain and resilience in a social media post related to rare disorder diagnosis.

Message from Jasmin Olayvar encouraging strength and resilience after enduring pain dismissed by doctors before rare disorder diagnosis.

Woman sharing a positive message about pain and rare disorder after doctors dismissed her symptoms for years.

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