Have you ever felt helpless watching a loved one struggle with a health condition, unsure of what to do or say? For families and friends of people with epilepsy, this feeling can be all too familiar. Epilepsy, a neurological disorder marked by sudden and often unpredictable seizures, brings unique challenges that ripple beyond the person diagnosed. Friends and family members may find themselves feeling anxious, worried, or uncertain about how to best offer support without overstepping.
On National Epilepsy Day, we emphasise the importance of a strong support system for those living with this condition. We spoke to our expert Dr Pavan Pai, Consultant Interventional Neurologist, Wockhardt Hospitals, Mira Road, who listed some helpful tips on how friends and family can provide meaningful, respectful, and empowering support to their loved ones with epilepsy.
How To Support Your Loved Ones With Epilepsy?
Here are a few tips for family members and friends on how to best support a loved one with epilepsy.
Learn About Epilepsy
"Learning about epilepsy is one of the most crucial things you can do as a friend or family member. Understanding what epilepsy is and how it affects the brain is crucial to providing effective support," said Dr Pai.
According to the World Health Organization, epilepsy is a long-term, non-contagious brain disorder that impacts approximately 50 million people globally. It is marked by sudden, recurring seizures and involuntary movements that can affect a specific part of the body (partial seizures) or the entire body (generalised seizures). In some cases, these episodes are accompanied by loss of consciousness and a lack of control over bowel or bladder function.
By learning about the condition, you’ll be able to anticipate potential challenges your loved one may face and be better prepared to respond appropriately in case of an emergency.
Also Read: Familial Epilepsy: Expert Explains The Genetic And Environmental Factors Behind Inherited Seizures
Stay Calm During a Seizure
When a loved one experiences a seizure, it’s essential to stay calm. Your immediate reaction can make a big difference in how the situation unfolds. If you’re with someone during a seizure, it’s important to focus on ensuring their safety.
Dr Pai added, "Clear the area of any potential hazards, such as sharp objects or hard surfaces, that could cause harm. You should not attempt to hold them down or restrain them in any way, as this can lead to injury. Instead, focus on ensuring they have a safe space to ride out the episode."
Help after the Seizure
After a seizure, your loved one may feel confused, tired, or disoriented. This is often referred to as the postictal state, and it can last anywhere from a few minutes to several hours. You should provide comfort and reassurance during this time. "Be patient as they regain their bearings, and avoid overwhelming them with too much information or questions. Many people feel embarrassed or frustrated after a seizure, so offering a quiet, calming environment can be incredibly helpful", said Dr Pai.
Make sure your loved one doesn’t feel alone during this time. If they seem tired, encourage them to rest and recover before attempting to resume their normal activities.
Also Read: Epilepsy: Expert Explains Treatment Options And Lifestyle Changes
Respect Their Independence
Let them live their life as they please. Most epilepsy patients hate the thought of being physically dependent on others to perform day-to-day activities. Helping them in every little task can negatively harm their confidence.
While it’s natural to want to help your loved one with everything, it’s essential to respect their independence. People living with epilepsy often struggle with the idea of relying on others for daily tasks, and being overly helpful can unintentionally diminish their sense of autonomy. Encourage your loved one to take control of their own life as much as possible, allowing them to make decisions and manage their epilepsy in the way that works best for them.
Be Patient
Supporting a loved one with epilepsy can sometimes be emotionally challenging. According to a 2023 study, families of children with epilepsy often face challenges like heightened stress, communication difficulties, and financial strain. Additionally, certain parental coping behaviours can have adverse effects. Irregular routines, limited communication, and overprotectiveness can raise stress levels within the household.
"During these times, it’s important to remain patient. Your loved one may experience mood swings or periods of heightened anxiety. Hence, create a safe space where they feel comfortable sharing their fears, frustrations, or concerns without judgement. Encouraging open communication and offering emotional support will help them feel more secure", said Dr Pai.
[Disclaimer: This article contains information provided by an expert and is for informational purposes only. Hence, we advise you to consult your own professional if you are dealing with any health issues to avoid complications.]