For anyone dealing with new or worsening medical symptoms, the hope for a quick and accurate diagnosis is paramount. However, many individuals with episodic disabilities—conditions like migraines, lupus, Crohn’s disease, and epilepsy that present with intermittent and fluctuating symptoms—often face significant delays in receiving a diagnosis.
The Challenge of Diagnosing Epilepsy
New research from Michigan State University highlights the difficulties encountered by people with epilepsy, a neurological disorder affecting over 3 million people in the United States and 50 million globally. Epilepsy is characterized by unpredictable seizures, making it challenging for healthcare providers to identify using standard screening tools.
Epilepsy has varying symptoms that come and go, complicating diagnosis with regular screening methods. Individuals from low-income backgrounds and those with seizures that don’t show up on these tools often experience the longest delays. Without a diagnosis, these people may lack the necessary treatment, support, benefits, and understanding to cope with their condition.
Megh Marathe, assistant professor in the MSU colleges of Communication Arts and Sciences and Human Medicine
Research Findings
Marathe’s study, published in Disability Studies Quarterly, involved interviews with 25 people with epilepsy and 36 medical practitioners in a large Midwest hospital. The findings reveal a stark contrast: 52% of the epilepsy patients experienced delayed diagnoses, sometimes waiting from several months to five years for a formal confirmation, while the remaining 48% were quickly diagnosed, usually within days of their first seizure.
Patterns of Diagnosis
Marathe analyzed the experiences of these patients through a narrative lens, identifying two main diagnostic patterns:
- Quick Diagnoses: These cases resembled progress narratives, with clear, sequential steps leading to a formal epilepsy diagnosis. Participants in this group typically had strong relationships with their clinicians, access to specialty care, and visible seizures witnessed by others.
- Delayed Diagnoses: Conversely, delayed diagnoses followed cyclical narratives, where patients remained in cycles of unresolved symptoms and ineffective medical visits until they eventually received a diagnosis through chance or advocacy. These individuals often sought care in generalist settings, had normal routine test results, and faced prolonged medical confusion due to atypical symptoms.
Socioeconomic Impacts on Diagnosis
The pace of diagnosis can depend on various factors, including a patient’s life circumstances, sociocultural biases, access to care, and test results. According to Marathe, the timing and duration of EEG tests, a primary screening method for epilepsy, significantly influence the diagnosis process.
While EEG results showing abnormal activity often confirm a diagnosis, normal results do not necessarily rule out epilepsy. Patients with epilepsy can exhibit normal brain activity outside of seizures, and standard EEG tests, typically lasting 20-40 minutes, might not detect seizure activity.
Challenges in Generalist Settings
Individuals experiencing seizures for the first time generally visit primary or emergency care, where generalist practitioners often lack specific training in epilepsy. These providers typically order short, routine EEGs, which can fail to detect signs of epilepsy in up to 68% of known cases.
Generalist practitioners are usually trained to recognize generalized and convulsive seizures, but they often overlook less obvious, nontypical seizures. For instance, these seizures can present as sudden emotional changes, cognitive fluctuations, or unusual physical sensations.
Cyclical Narratives and Misdiagnosis
When their EEG results are normal, many patients with delayed diagnoses are dismissed or misdiagnosed by generalist practitioners. This leads them to remain in cycles of unresolved symptoms and frustrating medical encounters.
Participants in Marathe’s study ultimately received an epilepsy diagnosis only after months of worsening symptoms, often through the efforts of self-advocacy or chance meetings with more knowledgeable physicians. Individuals from low-income backgrounds were particularly susceptible to prolonged denial of diagnosis.
The Role of Specialized Care
Diagnosis is typically straightforward for individuals whose seizures occur in the presence of others or during medical tests and who can access specialty care. However, delays frequently occur when clinical practitioners fail to recognize seizures due to norms in medical education and practice, or because of insufficient specialized knowledge in primary and emergency care.
Implications for Healthcare Providers
Marathe argues that episodic disabilities complicate the analysis of medical signs and symptoms, requiring a more nuanced diagnostic approach. Healthcare providers should be trained not only to recognize visible signs but also to interpret underlying and invisible indicators of conditions like epilepsy.
Practitioners must consider demographic and socioeconomic factors that can influence the diagnostic journey. They should also be mindful of the limitations of screening tests and focus on the broader context of patient history.
Conclusion
The diagnostic challenges faced by individuals with episodic disabilities, such as epilepsy, underscore the need for improved healthcare strategies. By addressing the cyclical dynamics of delayed diagnoses and incorporating a more comprehensive understanding of episodic symptoms, healthcare providers can improve patient outcomes and provide necessary support.
Recognizing the impact of socioeconomic factors and ensuring equal access to specialized care are critical steps toward addressing these challenges. Patients and healthcare providers alike can benefit from this more holistic approach to diagnosis and care.
We invite our readers to share their thoughts on this issue. Whether you have personal experience with episodic disabilities or are interested in healthcare policies, your insights can contribute to a more informed and compassionate dialogue. Please leave your comments below and consider subscribing for more articles on health and disability studies.