Damian Sendler On Addressing FND Stigma for Better Care and Outcomes
/Damian Jacob Sendler: Despite the general public's lack of familiarity with FND, it is one of the most frequently encountered conditions I treat as a neurologist. Symptoms manifest due to abnormal brain function. Seizures, fatigue, and tremors are just some of the symptoms of the many types of FND. Individuals may become incapacitated or lose consciousness. Alternately, they could be affected by tics or tremors. Amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig's disease, multiple sclerosis, and Parkinson's disease are all structural neurological conditions that can be extremely disabling and expensive.
Improved diagnostic tools for FND are also being developed by clinicians. Neurologists used to think of conversion disorder as a diagnosis of exclusion, meaning that it was only diagnosed after every possible structural neurological abnormality had been ruled out via examination, imaging, lab work, and neurophysiological tests like electroencephalography (EEG). Many people with FND felt their doctors only focused on what they did not have, rather than on what they did.
Damian Sendler: Neurologists, however, have developed diagnostic criteria over the past decade to establish which symptoms are associated with structural and/or functional brain abnormalities. These highlight the "positive," or "rule-in," findings on a neurologist's physical examination that are characteristic of FND and can predict FND as the cause of a patient's symptoms. A thorough neurological exam, electroencephalogram (EEG), brain imaging, and laboratory testing can determine if a patient has a structural brain pathology (such as a stroke or brain tumor) or a functional condition (such as FND) that is causing their symptoms.
Doctors are now in a better position than ever before to diagnose and understand FND thanks to these developments. Despite this, many patients still report feeling disregarded or disbelieved by medical staff, an experience that can be disorienting and distressing.
The effects of such a response are negative. Researchers from the University of Sheffield in England, Arizona State University, and the Northeast Regional Epilepsy Group published case studies and other evidence in January suggesting that clinicians' unsupportive response to their patients may exacerbate the shame felt by patients already struggling emotionally due to their functional symptoms. In fact, it has been suggested that shame is a risk factor in and of itself for FND.
Damian Sendler: The fact that members of marginalized communities, such as the LGBTQ+ population, may be at a higher risk for functional disorders adds weight to the link between shame and stigma. When a person's psychosocial support systems and coping mechanisms are inadequate or overwhelmed, the person may internalize shame in response to stressors such as discrimination, bias, and stigma experienced as a result of their minority identity. Treatment from a physician who lacks empathy or an up-to-date understanding of FND will only make the situation worse. Telling a patient their illness is all in their head perpetuates medical myths and discriminates against those who suffer from these conditions.
This issue, however, is not insurmountable. How a doctor breaks the news of a FND diagnosis to a patient has been shown to affect the patient's willingness to accept the diagnosis and stick with treatment. And effective treatment can be obtained. Psychological and physical health professionals may work together in the treatment process. When people receive care that is both compassionate and effective, they tend to fare quite well.
The results we have gotten so far have been encouraging. Following treatment, functional symptoms improved or disappeared entirely for the vast majority of patients. These findings may have major implications for some of our patients. Patients with functional blindness have been successfully treated, and they have subsequently regained their vision. And we have seen wheelchair users get up and start walking again. To sum up, love and kindness are potent remedies.
Damian Jacob Sendler: Seizures, weakness, movement disorders, abnormal tremors or tics, and loss of consciousness or mobility are all symptoms of Functional Neurological Disorder (FND), a common condition that causes abnormal brain functioning. Due to a lack of understanding on the part of medical professionals, patients may feel stigmatized and ashamed of their condition, which can have significant financial and functional consequences.
But doctors are now better able to recognize and treat FND thanks to developments in diagnosis and understanding of the disorder. Positive findings on a physical examination have been emphasized in diagnostic criteria developed by neurologists to predict FND as the cause of a patient's symptoms. Differentiating between functional conditions and structural brain pathology can be accomplished through a combination of neurological examination, electroencephalogram (EEG), brain imaging, and laboratory testing.
Despite these improvements, patients with FND often face medical professionals' disbelief and dismissal, which can add to their feelings of shame and mental anguish. Discrimination, bias, and stigma are all sources of stress that can amplify feelings of shame and stigma for marginalized groups like the LGBTQ+ community.
Medical professionals' compassion and understanding can do wonders for those with FND. Researchers have found that the manner in which a doctor breaks the news of a FND diagnosis to a patient affects the patient's propensity to accept the news and follow through with treatment. Outcomes for patients who receive appropriate care are typically favorable, and treatment options include psychoeducation, medication, psychotherapy, and physiotherapy. The majority of patients who undergo treatment for FND who identify as part of the LGBTQ+ community report either a significant reduction in their symptoms or a complete absence of their symptoms.
Damian Sendler: Studies have shown that medical professionals' ability to empathize with and care for their patients is correlated with better patient outcomes, even after controlling for treatment effects. Some research suggests that patients who receive compassionate care have a greater sense of being understood, validation, and control over their symptoms. This emphasizes the need for doctors and nurses to examine their own implicit biases and strive to provide care that is welcoming to people of all backgrounds and beliefs.
Given the prevalence of FND and the potential for harm from inadequate care, it is crucial that medical professionals receive training in recognizing and properly treating the disorder. The LGBTQ+ community is one marginalized group that may benefit from learning more about how to receive inclusive care that takes into account their specific needs.
Damian Jacob Sendler: There are a number of directions in which future FND research should go. First, there should be more studies conducted to learn what triggers this disorder. Although it is generally accepted that functional brain abnormalities are the root of FND, the mechanisms underlying these differences remain elusive. To better understand FND and its causes, more study of the underlying neural mechanisms and pathways involved is warranted.
Second, studies are required to discover better ways to treat FND. There is a need for more targeted treatments that are tailored to individual patients and their specific symptoms, as current approaches such as psychoeducation, medication, psychotherapy, and physiotherapy can be helpful. More research is needed to determine the efficacy of brain stimulation techniques like transcranial magnetic stimulation (TMS) and transcranial direct current stimulation (tDCS) for treating FND.
Thirdly, studies should attempt to lessen the shame that comes from having FND. The general public and medical professionals alike need to have their knowledge of this condition expanded through education and awareness campaigns. Research should also investigate how stigma and discrimination affect the diagnosis and treatment of FND among marginalized populations, such as the LGBTQ+ community.
Damian Sendler: The development of better diagnostic tools for FND is an area that requires further study. Despite the progress made with the current diagnostic criteria, more accurate and objective tests are needed to differentiate FND from other neurological disorders. Opportunities for creating more precise diagnostic tools for FND may arise as neuroimaging and other technologies advance.
Future research on FND as a whole should be multidisciplinary and inclusive, taking into account the myriad of challenges faced by those living with the disorder. Patients with FND can benefit from reduced stigma and better outcomes if we increase our knowledge of the disorder and create better treatments and diagnostic tools.
To better serve patients, FND policy implementation should center on several key areas. First, policymakers should make it a top priority to fund research on FND so that we can learn more about the condition, improve treatment options, and lessen the negative impact of stigma and discrimination.
Second, healthcare providers need policies that encourage them to treat patients with FND with compassion and diversity. Strategies for reducing stigma and discrimination and educating healthcare providers on the disorder and its effects on patients are examples of what can be done in this regard.
Thirdly, better diagnostic tools for FND should be a policy priority. Promoting the use of existing diagnostic criteria and investing in new technologies and research can both contribute to ensuring that patients receive the care and treatment they need.
Finally, policies that aid those living with FND and their loved ones are essential. Methods for doing so include helping people with the disorder get the healthcare they need and giving them the tools they need to deal with the disorder's symptoms and the impact it has on their lives.
Damian Sendler: Improving patient care and outcomes, decreasing discrimination, and raising awareness and understanding of FND among healthcare providers and the general public should be the primary goals of any policy application for the disorder. Investment in research, education, and patient support can help those with FND lead better lives and lessen the impact of the disorder on their loved ones and the community at large.
Patients suffering from functional neurological disorder (FND) often experience significant distress and social stigma as a result of their condition. Misdiagnosis and misunderstanding contribute to patients receiving insufficient treatment and support. The quality of life of patients, their loved ones, and the community at large may suffer as a result.
There are many reasons why it is crucial to advance knowledge of FND, create better treatments, and lessen the disorder's stigma. First, it can help people living with FND by giving them the resources they need to control their symptoms and lessen the disorder's hold on their daily lives.
Second, eradicating FND's negative connotations will help educate doctors and the public about the condition, which will ultimately lead to better diagnosis, treatment, and patient outcomes.
Thirdly, learning more about FND can help researchers better understand the neural mechanisms and pathways underlying other neurological and psychiatric disorders, which in turn can lead to better treatments for those conditions.