World Undiagnosed Day

on 03 4, 2011

World Undiagnosed DayIn the spirit of the international Rare Disease Day on February 28th, I’d like to personally declare March 5th World Undiagnosed Day.

Patients who are undiagnosed often share a long road of searching with patients of rare diseases or rare presentations of more common diseases, and therefore deserve a day of their own to receive greater awareness, understanding, respect and compassion.

 

 

World Undiagnosed Day would be a day to recognize:

  • People who have yet to find out why they are sick
  • People who struggled for years to find a diagnosis
  • Family members and friends who support their undiagnosed loved ones
  • Physicians and other healthcare practitioners who take on challenging diagnoses
  • Organizations and individuals who work on the behalf of undiagnosed patients
  • Scientists and inventors who work to develop diagnostic tools
  • Medical researchers who work to identify new diseases
As a patient who went undiagnosed for 25 years in spite of my best efforts to advocate for myself, I learned a lot about the challenges that exist for people who don’t know why they’re sick.

Most long-undiagnosed patients live day in and day out with a sense of impending doom. Without a known cause for their symptoms, they don’t know why their bodies are malfunctioning or how to interpret the seriousness of their situation.

Since few undiagnosed patients are doctors, they don’t have the necessary language, training and access to a medical professional, and are left to travel a foreign land without a map, compass or guide, gambling countless dollars on the chance that the road they are on will lead them to relief in the form a cure… or at least answers.

Their experiences are often uniquely challenging as they:

  • Seek to solve a mystery that steals their well-being and encroaches on their quality of life
  • Muster their strength to manage day to day instead of enjoying their families and fulfilling their potential
  • Struggle to pay their bills and manage the stress of mounting medical costs with little or no sign of progress
  • Fight back fear that the signs they experience are of a fatal or permanently disabling illness that is invading their bodies, and each day that passes they are losing ground
  • Place their hope in the hands of doctors and diagnosticians to put a name to their suffering
  • Endure test after test in the hopes of finding a clue, and celebrate a positive test result, even if it means a difficult diagnosis
  • Participate in treatments, that include painful procedures or harmful side effects, and are ineffective
  • Overcome bias and discrimination based on prejudice against those who are sick
  • Seek in desperation others with similar experiences who may at last understand their situation
  • Summon the strength to keep searching when they encounter one more dead end
  • Dare to defy doctors who deal out wrong diagnoses due to lack of evidence, knowledge or experience, or who simply avoid diagnosing at all in order to protect themselves
  • Wait patiently for weeks, months or years to see a doctor who may or may not be able to help them
  • Lose their loved ones and livelihood to a life in lingering limbo
  • Dream of an end to the search – of freedom from the unknowing

Most support groups are defined by a disease in common, so resources for undiagnosed patients are few and far between. I eventually ended up finding support from other undiagnosed patients in communities online that focused on rare diseases.

Of particular concern is the financial situation of many undiagnosed patients because:

  • Disability coverage is limited to those with a diagnosis
  • Most employers are unequipped to address the needs of someone with an unexplained prolonged illness, and may blame the employee’s attitude for substandard performance
  • Some undiagnosed patients lose their jobs or are underemployed because they can’t work, and therefore go without insurance
  • Most healthcare practitioners cannot afford to spend the time and effort necessary to investigate a puzzling case, and may be unwilling to take on patients that have been long undiagnosed because they think that if there was something to be diagnosed, it would have been done already
  • Medical insurance is designed to limit how much exploration and investigation can be done, and counseling is only covered based on a “legitimate” diagnosis
  • Many patient assistance programs only provide financial aid to patients with specific diagnoses
  • Family members and friends may misinterpret a long-undiagnosed health concern as an excuse to not work or help around the house, grow tired of hearing about the prolonged struggle, or become overwhelmed by the financial burden and leave patients to manage on their own
  • Financial stressors can contribute to the patient’s illness, compounding the problem

Like many undiagnosed patients who go years without resolution, I got an up-close-and-personal perspective on the difficult task that doctors have in finding a diagnosis, and the limitations of imaging and testing (as progressive as it is). My personal heroes are the doctors I finally found who went above and beyond to help me get the official diagnosis and treatment I needed.

Let’s take the opportunity to express our support and encouragement to people with undiagnosed diseases on March 5th, and give a message of hope that they’re not on their journey alone.

“I am so many things before I am a person who is sick.”

Ellen Berry
Founder, World Undiagnosed Day Initiative

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