When Systems Fail: Jodey Whiting’s Story and the Danger of Dismissing Tarlov Cyst Disease

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When Systems Fail: Jodey Whiting’s Story and the Danger of Dismissing Tarlov Cyst Disease

On February 21, 2017, Jodey Whiting died by suicide—just two weeks after the UK Department for Work and Pensions (DWP) stopped her disability benefits. A recent second inquest confirmed what disability advocates have long warned: systemic failings by government and healthcare bodies can push vulnerable people to the brink.

In Jodey's case, five serious oversights by the DWP led to the wrongful removal of her Employment Support Allowance (ESA), triggering a mental health crisis and, ultimately, her death. But what many overlook is that Jodey Whiting was living with extreme, chronic pain due in part to a little-understood spinal condition: Tarlov Cyst Disease—a rare and debilitating disorder that remains widely dismissed by the medical community despite growing evidence and available treatments.

What Is Tarlov Cyst Disease?

Tarlov Cysts, also called perineural cysts, are cerebrospinal fluid-filled sacs that form on nerve roots—most commonly in the sacrum. While some cysts remain asymptomatic, up to 20% become symptomatic, causing severe nerve pain, mobility limitations, pelvic dysfunction, and more. The condition affects approximately 4.18% of the global population, and an estimated 85% of symptomatic patients are women, many of whom are misdiagnosed or dismissed entirely.

Jodey’s diagnosis of an inoperable (according to the story) perineural cyst came in 2016—less than a year before her death. It contributed to escalating pain and disability, and yet there’s no indication that her condition was treated as the serious neurological disease that it is.

Misunderstood, Mismanaged—and Often Ignored

Like many Tarlov Cyst patients, Jodey faced barriers not only from disability agencies but also from within the healthcare system. The medical dismissal of her pain and condition mirrors a pattern we see too often:

• Doctors unaware of current diagnostic protocols assume cysts are “incidental findings.”

• Treatments that could help exist—including surgery, nerve blocks, and pressure reduction strategies—but are difficult to access without proper diagnosis or referral.

• Patients are routinely labeled as hypochondriacs, sent away with no plan, and left to deteriorate physically and mentally.

  
  

Jodey’s Final Days: A Cascade of Failures

According to the inquest, Jodey had not been informed in time about a mandatory medical review appointment. When she missed it, her benefits were halted immediately. She was housebound, unable to walk, and fighting both physical and mental health challenges. Despite repeated attempts by her mother, Joy Dove, to rectify the situation, the DWP upheld their decision. A letter confirming this was delivered just days before Jodey died.

An Independent Case Examiner (ICE) later confirmed five safeguarding failures by the DWP, including:

• Not honoring her request for a home medical exam

• Not contacting her after the missed appointment

• Not notifying her GP

• Failing to assess her documented mental health status

• Making decisions without sufficient review

  
  

We Must Do Better—for Jodey, and for Thousands Like Her

Jodey Whiting’s death is not an isolated incident. It’s one of many linked to policy decisions that lack compassion and understanding. But it also reveals a silent crisis: the ongoing dismissal of Tarlov Cyst Disease as a non-serious or imaginary illness. Patients like Jodey are left in limbo—too ill to work, but too misunderstood to qualify for support or receive informed care

While it’s unclear whether Jodey ever accessed a specialist with expertise in treating symptomatic Tarlov Cysts, we do know that informed care exists—just not equitably. Surgeons in the UK, Europe, and North America have had success treating select cases. Research-based diagnostic protocols have emerged. But none of this matters if healthcare providers don't know where to look or don't believe the patient in front of them.

How the Tarlov Cyst Society is Taking Action

The Tarlov Cyst Society exists to close this gap. We’re building the world’s first Patient Registry, working to educate medical professionals, and helping patients become powerful advocates for their own care.

We also fight to ensure that what happened to Jodey doesn’t happen again—by spreading awareness, highlighting systemic failings, and demanding better for those with invisible and misunderstood conditions.

Final Thoughts

Jodey Whiting deserved care. She deserved compassion. And she deserved to live in a system where her pain and condition were taken seriously. Instead, her life ended far too soon—an outcome that may have been preventable with proper support and informed care.

We honor her memory by demanding more—more knowledge, more empathy, more action.

If you or someone you know is living with Tarlov Cyst Disease and struggling to find answers, start with education. Visit the Tarlov Cyst Society to access resources, find support, and be part of a movement that’s changing the narrative.

Want to learn more? Visit Justice For Jodey