Written by Liza Blumenfeld, MA, CCC-SLP, BCS-S
Every human has experienced the uncomfortable sensation of choking. For many, it is a sporadic event that passes without much thinking. A loved one may offer a reminder to “slow down” or “not talk with your mouth full”. Unfortunately, for some, the fear of swallowing is an all-encompassing emotion that can render the act of eating as joyless. A small percentage of these individuals bear this burden while being told that their symptoms are essentially baseless. In other words, they are told it is all in their heads.
Phagophobia is a word that comes from Greek phagein, “eat” and phobos, “fear”. It is a fear of swallowing that manifests in various symptoms without any apparent physical reason detectable by a traditional assessment. The disorder can wreak havoc on normal eating in a variety of ways. Patients may avoid certain types of food or textures, hyper-masticate (over-chew) their food, complain of food sticking, exhibit difficulty getting the swallow “started” and lose weight. All of these symptoms can create elevated levels of anxiety and cause patients to socially isolate themselves during mealtimes.
Patients suffering from phagophobia can often associate the onset of their symptoms following either a single or series of traumatic events that involved the act of eating. Examples may include choking, regurgitation, abuse or other negative experiences. Symptoms may steadily get worse or more frequent over time, which translates into further degradation of individuals’ quality of life. Patients who actively seek out assistance in treating the disorder are often met with frustration and disappointment by healthcare professionals. This is largely due to the fact that traditional assessment methods fail to identify any physiologic underlying cause of the dysfunction.
Swallowing disorders are evaluated by a multi-disciplinary team that includes: the otolaryngologist, gastroenterologist and speech-language pathologist. Assessment methods include the Clinical Swallowing Evaluation, Fiberoptic Endoscopic Evaluation of Swallowing (FEES) and Modified Barium Swallowing Study (MBSS). Each of the examinations incorporate methods that allow the clinician to visualize and analyze the integrity, strength and coordination of the swallowing muscles. When areas of weakness or dysfunction are identified, treatment plans are generated in order to restore normal swallowing activity. Patients with phagophobia typically report having significant alterations to swallowing function, however, diagnostic testing fails to correlate those symptoms with objective impairment. Patients are subsequently told that swallowing function is “completely normal.”
Speech-language pathologists are often at a loss as to how to offer benefits to these individuals and frequently refer them to mental health practitioners who similarly, have limited experience in managing and treating dysphagia. Unfortunately, this leaves an individual with phagophagia with zero answers for how to cope and treat their crippling disorder.
The good news is that slowly the tide is turning. Phagophobia is receiving increasing visibility through clinical research initiatives that explore underlying causes and treatment options. A recent study performed by scientists at Johns Hopkins University showed that 13% of patients previously diagnosed with phagophobia were re-evaluated and found to have tangible and objective swallowing abnormalities. These deficits were most commonly detected in the esophagus and were identified through “High Resolution Manometry” (HRM). HRM is a test that measures esophageal motility, or how food is squeezed through the esophagus and into the stomach. Altered motility can cause severe swallowing difficulties including pain, sensation of food sticking and regurgitation. Another recent study (Sundstrup et al.) found patients with phagophobia have objective changes in the part of the brain that is responsible for chewing and preparing bites of food. This groundbreaking study, for the first time, ignites the notion that the disorder must be treated in a similar fashion as other diagnoses that involve neurological dysfunction. While the presence of brain changes is important, the salience of the mental health component cannot be excluded from the treatment equation.
Research studies are now highlighting the extraordinary clinical value of symbiotic swallowing therapy and psychotherapy as an effective tool to manage this disorder. Cognitive behavioral therapy is described as a type of psychotherapy in which negative patterns of thought about the self and the world are challenged in order to alter unwanted behavior patterns. This therapeutic technique, paired with specialized swallowing therapy has shown great promise as an effective regimen to manage the symptoms of phagophobia. Patients work at dissembling their complex fears and belief patterns regarding swallowing and replacing them with successful eating encounters. The process can be slow, however, most patients who commit to treatment, can completely overcome their intense fears and regain a more normal and fulfilling quality of life.
As heightened visibility and awareness of the disorder increases across the continuum of providers, patients with phagophobia should feel a sense of hope and relief that there can be resolution to their debilitating symptoms. Success lies in identifying a team that can provide a thorough multidisciplinary assessment with adjunctive mental health services. It is anticipated that patients will feel empowered to participate in their own care by utilizing a cognitive behavioral therapist that will collaborate with their dysphagia team (http://www.nacbt.org/searchfortherapists.ASP). This combined technique carries the greatest promise in enabling patients to regain the joy of eating for a more satisfying quality of life.