Overprotection in Epilepsy: When Care Becomes a Barrier

Introduction

Epilepsy affects over 65 million people worldwide and is marked by recurrent, unprovoked seizures.(1) While support from family and community is vital, excessive care can slip into overprotection, imposing restrictions based on fear rather than medical advice. This limits opportunities in education, work, relationships, recreation, and independent living. Though often well-meaning, such actions reduce autonomy, reinforce stigma, and harm quality of life.

This article explores the roots of overprotection, highlights areas where it commonly occurs, examines its negative consequences, and provides strategies to strike a healthier balance between safety and independence.

The Roots of Overprotection

Overprotection stems largely from fear and uncertainty:

• Fear of seizures and injuries: Witnessing a seizure can be frightening, often leading family members to assume that avoiding risk altogether is safer.(2)

• Limited knowledge about epilepsy: Misunderstandings about seizure triggers, treatment, and prognosis cause families to overestimate risks.(3)

• Cultural stigma: In many societies, epilepsy is associated with myths such as curses, possession, or fragility, reinforcing unnecessary restrictions.(4)

• Desire to “play it safe”: Loved ones believe they are protecting PWE by discouraging activities, but in doing so, they limit independence.

Some common areas of overprotection

1. Education and Career: Families sometimes discourage higher education, technical training, or certain careers (e.g., engineering, healthcare, law enforcement) due to perceived risks. Yet, studies show that with seizure control and accommodations, PWE can excel academically and professionally.(5) Overprotection in this area hinders financial independence and self-fulfillment.

2. Transportation and Mobility: Many families restrict PWE from traveling alone, using public transportation, or cycling even when seizures are controlled. Driving, when legally permitted after seizure-free intervals, is also often discouraged. These restrictions reduce access to jobs, healthcare, and social networks.(6)

3. Sports and Physical Activity: Activities such as swimming, jogging, hiking, or joining team sports are frequently restricted. Yet, evidence shows physical activity improves cardiovascular health, mood, and seizure control.(7) With precautions (e.g., swimming with a companion), PWE can safely engage in most recreational activities.

4. Social Life: Overprotective families may discourage parties, late outings, or travel with friends. Social isolation, however, contributes to depression, anxiety, and stigma internalization.(8)

5. Independent Living: Loved ones often insist on constant supervision, preventing independent housing or routine tasks such as cooking. However, safety modifications like cooking on back burners, using microwaves, and seizure alarms enable autonomy.

6. Relationships and Marriage: Families may restrict dating or discourage marriage due to fears about safety, childbearing, or stigma. This creates emotional distress and reduces opportunities for forming healthy partnerships.(9)

Negative Consequences of Overprotection

While rooted in care, overprotection can:

• Reduce autonomy and decision-making skills.

• Lower self-esteem and confidence.

• Increase anxiety, depression, and dependency.(10)

• Reinforce stigma by portraying PWE as incapable.

• Limit opportunities for personal growth and social integration.

Activities PWE Can Participate In (with Precautions)

Contrary to protective assumptions, PWE can safely engage in a wide range of activities:

• Education & Work: College, technical programs, careers in diverse fields (with accommodations as needed).

• Sports: Walking, running, yoga, cycling, supervised swimming, gym exercise.

• Travel: Domestic and international travel with medication planning.

• Hobbies: Art, music, gardening, volunteering, technology.

• Daily Living: Cooking with safety tools, public transport, independent living.

Precautionary strategies (seizure alerts, supervision in high-risk activities, medication adherence) allow safe participation without unnecessary restrictions.

Striking the Balance: Protection vs. Independence

• Individualized risk assessment: Not all PWE face the same risks—restrictions should be tailored to seizure type and frequency.

• Open communication: Families should discuss safety measures with healthcare providers rather than making unilateral restrictions.

• Safety strategies: Buddy systems for swimming, seizure alarms, first aid training for friends and family.

• Empowerment: Encouraging autonomy improves quality of life and self-confidence.

The Role of Education and Advocacy

Education is crucial to reducing overprotection:

• Family education programs: Teaching seizure first aid and safe activity guidelines.

• Community advocacy: Public campaigns challenging stigma and myths.

• Support groups: Sharing experiences with peers reduces family fear and empowers PWE.

• Policy and workplace inclusion: Promoting accommodations in education and employment.

Conclusion

Support from family and loved ones is vital for people with epilepsy. However, when care crosses into overprotection, it can cause more harm than good. Restrictive practices, though well-meaning, undermine independence, social participation, and mental health. By embracing education, open dialogue, and safety strategies, families can protect without limiting, empowering PWE to live fulfilling, autonomous lives.

References

1. World Health Organization. (2023). Epilepsy Fact Sheet. https://www.who.int/news-room/fact-sheets/detail/epilepsy

2. Kerr, C., Mensah, S., Besag, F. et al. (2011). International consensus on quality standards for epilepsy care. Epilepsia. 2011. https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1528-1167.2011.03276.x

3. Jacoby, A. & Austin, J. (2007). Social stigma for epilepsy: Perspectives from people with epilepsy. Epilepsy & Behavior. https://pubmed.ncbi.nlm.nih.gov/18047591/

4. Baskind, R. & Birbeck, G. (2005). Epilepsy-associated stigma in sub-Saharan Africa. Science Direct. https://www.sciencedirect.com/science/article/abs/pii/S152550500500140X

5. Bishop, M., & Chiu, C.-Y. (2011). Epilepsy and employment. In J. Pinikahana & C. Walker (Eds.), Society, behaviour and epilepsy (pp. 93–114). Nova Biomedical Books. https://psycnet.apa.org/record/2013-09040-007

6. Xu, Y., Zhou, Z., Shanthosh, J., Hackett, M. L., Anderson, C. S., Glozier, N., & Somerville, E. (2019). Who is driving and who is prone to have traffic accidents? A systematic review and meta-analysis among people with seizures. Epilepsy & Behavior, 94, 252-257. https://doi.org/10.1016/j.yebeh.2019.03.032

7. Arida, R.M., & Scorza, F.A. (2013). Physical activity and epilepsy: proven and predicted benefits. Sports Med. https://link.springer.com/article/10.2165/00007256-200838070-00006

8. Baker, G. A. (2006). Depression and suicide in adolescents with epilepsy. Neurology, 66(66_suppl_3), S5-S12. https://doi.org/10.1212/WNL.66.66_suppl_3.S5

9. Kinariwalla, N., & Sen, A. (2024). Epilepsy, marriage, and other social relationships. Comorbidities and Social Complications of Epilepsy and Seizures: The cognitive, psychological and psychosocial impact of epilepsy, 266. Epilepsy, Marriaage, and other social relationships

10. Thomson, L., Fayed, N., Sedarous, F. & Gabriel M Ronen, G.M. (2013). Life quality and health in adolescents and emerging adults with epilepsy during the years of transition: a scoping review. https://doi.org/10.1111/dmcn.12335