By: Ayesha Tufail
Photo Credit: The Defeating Epilepsy Foundation
Epilepsy and the quality of life:
Epilepsy is not only a neurological disease but also a complex condition that profoundly affects an individual’s well-being. Many people with epilepsy live a normal life, but there is no doubt that the long-term prognosis of epilepsy is poor in many cases owing to increased morbidity and mortality. This can be because of physical causes (e.g. fractures, scalding, bruising) as well as comorbidity with other systemic diseases and increased psycho-social problems.
(Marco Mula et al 2016)
Epilepsy is also associated with multiple comorbid conditions affecting mental and physical health. For example, people with epilepsy are more likely to suffer from depression and anxiety, and are also more likely to be socially isolated, less likely to maintain long-term relationships or be employed, less likely to be married, and generally have a lower quality of life when compared with those without epilepsy
(Miller et al 2017)
Stigma about epilepsy:
Stigma is a degrading and debasing attitude of the society that discredits a person or a group because of an attribute (such as an illness, deformity, color, nationality, religion, etc.) People with epilepsy often bare the negative attitudes. For a long time epilepsy has been misunderstood and a stigmatized disorder. Due to the stigma a person with epilepsy may be unable to have experiences in life that a person without epilepsy may experience. For example, dating. Patients may face stigma about epilepsy which may lead to them being unable to find suitable partners as they may simply get rejected due to the fact that they have epilepsy. A cross-sectional analysis done by Riasi et al showed that 53.7% of single participants that they remain unmarried simply due to epilepsy.
(Riasi et al 2014)
Social Anxiety and Self Isolation in Epilepsy:
Evidence from a recent meta-analysis reported a prevalence of 20.2% for anxiety disorders in patients with epilepsy (PWE). Social anxiety is a common and chronic anxiety disorder characterized by fear and reticence in social situations. Several cross-sectional studies reported that social anxiety is not a rare medical condition among PWE.
(Yingxue Lu et al 2021)
A research done on social isolation in PWE reported that epilepsy has a negative effect on participants trying to find a partner. They emphasized that partners fear epilepsy heredity. Seven participants do not have a partner. Five of these participants have previous experience with partnerships breaking down due to epilepsy. Participants believe that epilepsy represents an obstacle to finding a partner and starting a family.
I find it difficult to tell them [girls] that I have epilepsy, because I was afraid that they will reject me. I understand that if you don’t know enough, you can’t respond. But, some girls, when I told them that I’m fine, understood, while some others told me that they don’t want a patient for a boyfriend immediately. (SL)
This proves that the fear of rejection can be a prevalent reason for participants to not find a partner as this can cause anxiety and instead choose to self-isolate.
(Milnar et al 2016)
Treatment Therapy for social anxiety:
Psychotherapy improves symptoms in most people with social anxiety disorder. In therapy, you learn how to recognize and change negative thoughts about yourself and develop skills to help you gain confidence in social situations.
Cognitive behavioral therapy (CBT) is the most effective type of psychotherapy for anxiety, and it can be equally effective when conducted individually or in groups.
In exposure-based CBT, you gradually work up to facing the situations you fear most. This can improve your coping skills and help you develop the confidence to deal with anxiety-inducing situations. You may also participate in skills training or role-playing to practice your social skills and gain comfort and confidence relating to others. Practicing exposures to social situations is particularly helpful to challenge your worries.
(Mayo Clinic 2021)
Fighting Stigma:
Taking therapy is important for PWE but it is important for the general public to educate themselves and learn about Epilepsy instead of following a Stigma set by society. As this has negative effect on PWE who wish to continue there life and live normally in society without being stigmatized.
References:
Lu, Y., Zhong, R., Li, M., Zhao, Q., Zhang, X., Hu, B., & Lin, W. (n.d.). Social anxiety is associated with poor quality of life in adults with epilepsy in Northeast China: A cross-sectional study – sciencedirect. https://www.sciencedirect.com/science/article/abs/pii/S1525505021001001
Mayo Foundation for Medical Education and Research. (2021, June 19). Social anxiety disorder (social phobia). Mayo Clinic. https://www.mayoclinic.org/diseases-conditions/social-anxiety-disorder/diagnosis-treatment/drc-20353567
Miller, W. R., Gesselaman, A., Garcia, J., Groves, D., & Buelow, J. (n.d.). Epilepsy-related romantic and sexual relationship problems and concerns: Indications from internet message boards – sciencedirect. https://www.sciencedirect.com/science/article/abs/pii/S1525505017303797
Mlinar, S., Petek, D., Cotič, Ž., Mencin Čeplak, M., & Zaletel, M. (2016). Persons with epilepsy: Between Social Inclusion and Marginalisation. Behavioural neurology. https://pmc.ncbi.nlm.nih.gov/articles/PMC4861793/
Mula, M., & Sander, J. W. (2016, August 17). Psychosocial aspects of epilepsy: A wider approach. BJPsych open. https://pmc.ncbi.nlm.nih.gov/articles/PMC4995176/
Riasi, H., Rajabpour Sanati, A., & Ghaemi, K. (2014, December 23). The stigma of epilepsy and its effects on marital status. SpringerPlus. https://pmc.ncbi.nlm.nih.gov/articles/PMC4320190/
