About Undiagnosed: Medical Refugees
Undiagnosed: Medical Refugees is the untold story of the millions of people just like you whose lives have been devastated due to unknown or unsolved illnesses. What understanding more about the predicament of children and adults in this difficult situation could offer to the future of medicine is astounding, yet this population remains virtually ignored. These people exist as medical refugees in a modern health care system, living in a constant state of unknown.
There are no specific statistics on how many patients are undiagnosed since this population is too ill-defined, but the figures are undoubtedly in the hundreds of millions. The rare disease community alone is estimated to include 350 million worldwide. On average, it takes 7.6 years for a rare disease patient in the US to receive a proper diagnosis.
Experience the journey of undiagnosed children and adults as we follow 6 different families who have been fighting for answers, and see what it is like for some of them when they finally get there. Learn what some of the best minds in science and medicine have to say about their struggles when dealing with complex cases, and their perceptions of how health care has the potential for improvement. As we piece together the patient stories and the documentary as a whole, we follow the ins-and-outs of the Creator and Co-Director’s own experience. Dr. Katia Moritz is a full-time working mother of three children who became very sick following a routine endoscopy four years ago. After being assessed at all of the best institutions in the country, she still remains undiagnosed.
Through the unique dichotomy of being an undiagnosed patient and a clinician, who for over two decades has specialized in the treatment of severe anxiety disorders, Dr. Moritz affords this film great insight into the difficult dilemmas challenging every health care provider: manifestations of psychiatric symptoms versus unexplained medical symptoms. It is this dilemma that is resulting in millions of undiagnosed individuals being misdiagnosed with psychiatric symptoms, while their original disease goes untreated. Dr. Moritz’s guiding perspective, along with patient stories, their family’s experiences, and doctors’ insight, will be structured together to provide an arc of who the undiagnosed are, what they struggle with, what they need from the medical system, and how they hope to be treated now and into the future.
What does "Undiagnosed" mean?
“Most of us expect to have a health issue at some point in our lives, what we don’t expect is to have an illness that no one can figure out.”
-Dr. Katia Moritz
Children and adults are considered to be undiagnosed if an explanation for their symptoms cannot be found over a reasonable period of time, despite repeated examinations. Why can’t they be diagnosed? A few of the many, many possibilities include: The proper testing has not been conducted, or the tests that have been done were not performed or interpreted correctly; the right specialist has not been found; they have a known condition that is presenting in an unusual way; or, they have an illness that has not yet been understood or named.
Being undiagnosed is anything but rare, in fact this problem occurs far more often than most people would expect. Think about it- did you ever know or hear about someone who could not find a diagnosis or treatment for his or her medical problems? What would it feel like to find yourself, or somebody you cared about, in this difficult situation?
The Future of Medicine
For those seeking answers, finding a diagnosis, even a serious or complicated one, feels like finding their identity. Failing to find a diagnosis often leads to feeling abandoned, lost, invalid, helpless, or hopeless- as well as powerful negative emotions such as anxiety, fear, anger, or depression. It is heartbreaking to truly consider the suffering and predicaments that these people and their families can go through.
Inability to meaningfully address the plight of undiagnosed people is also a tragedy for doctors, researchers, and medical facilities. The worst nightmare for many of these caring people and institutions is to be unable to help or answer the questions of the patients and families who depend on them.
Historically, investigating medical mysteries has led to some of the greatest breakthroughs in treatment. Currently, when most undiagnosed children or adults die, there is no label, category, or database where doctors can file their medical information for future analysis. This results in losing a vast and untapped resource that could hold the key for discovering new diseases, furthering our understanding of current diseases, and finding new treatments and cures. The undiagnosed population has the potential to play a critical role in medical history.
Just like other kinds of refugees, undiagnosed individuals and their loved ones may wander from doctor to doctor, hospital to hospital, seeking answers. In a sense they are looking for a “medical home.” If they become desperate enough, they may start “treating themselves” or, losing faith in legitimate practitioners, they may seek shelter in all the wrong places, fall prey to charlatans, bogus remedies, or anyone unscrupulous enough to take advantage of their vulnerabilities.
Since the current medical system does not allocate reasonable compensation for the time and effort required to help these patients, many of the healthcare professionals or facilities that attempt to help undiagnosed patients are acting from the goodness of their hearts and for the love of medicine. Like the countries that take in refugees regardless of the risks or costs, these incredibly generous healthcare givers are usually the ones that are already overwhelmed by their patient populations. Sadly, a system that depends on “the kindness of strangers” will inevitably leave many undiagnosed adults and children high and dry.
Identity & Community
“The value of identity of course is that so often with it comes purpose.”
-Richard R. Grant
Well-understood diseases, like cancer, often have charitable foundations raising money for research as well as patients, families and healthcare professionals that unite for mutual support. Being “undiagnosed” is not commonly considered to be an identity, but it should be. Simply creating a category called “undiagnosed” would give such individuals more of a sense of community and identity. Knowing you fit in fosters a sense of empowerment, purpose, and hope. Helping people who are ill feel that others are supporting and advocating for them, and know that they exist, can make all the difference in the world.
"It's all in your head"
Without underestimating the complexities of differentiating medical and psychological conditions, a common thread that affects many undiagnosed patients is the tendency for doctors- sometimes out of frustration- to erroneously diagnose medically unexplained symptoms as psychiatric. Aside from the demoralizing effect this can have upon patients and their loved ones, the chances of a patient becoming accurately diagnosed in such instances are diminished. The words "it's all in your head" often imply that the patient is to blame, causing their symptoms on purpose, or “faking.” Parents of children who have symptoms that cannot be explained can be at risk of being accused of causing the illness or of being neglectful or abusive. This is an important issue that needs more emphasis in medical schools and healthcare institutions.
Living with the Unknown
Undiagnosed is not about assigning blame or deciding who is right or wrong. It is about awareness, validation, identity, and achieving a sense of direction. Without a diagnosis, patients often will not qualify for needed benefits or receive proper and compassionate healthcare. All they can do is to exist from day to day, feeling like they are drowning in confusion, desperation, and frustration. Living in a constant state of medical uncertainty is terrifying. Will I be able to continue working? Will my child live long enough to use their college fund? Many undiagnosed patients or parents of undiagnosed children are unable to plan for the next day, let alone any long-term future.
There is a well-known saying in the medical community: When you hear hoofbeats, you should think horses, not zebras. True, but what about the zebras? Undiagnosed was made for the millions of zebras all over the world who are stuck in limbo waiting for their doctors and the healthcare system to finally see their stripes.