Epilepsy is a group of neurological disorders characterized by a tendency for recurrent, unprovoked seizures, which are sudden bursts of abnormal electrical activity in the brain. Understanding how to communicate with someone who lives with this condition is a matter of respect and dignity. Thoughtful and sensitive language helps dismantle the stigma associated with epilepsy, creating a more supportive environment.
Checking In Immediately After a Seizure
The time immediately following a seizure is known as the post-ictal state, a period of temporary altered consciousness where the person’s brain is recovering. This state can last from minutes to days, during which the individual is often confused, drowsy, or disoriented. The primary goal of communication here is to be a calm, reassuring presence without overwhelming the person with information or noise.
After the seizure’s active movements have stopped, softly let the person know that they are safe and that you are there with them. Keep your voice gentle and your tone low, as the person may be mentally and physically exhausted. When they begin to regain awareness, ask simple, direct questions to assess their state, such as, “Do you know where you are?” or, “I am [your name], are you hurt?”.
A person in the post-ictal phase may struggle with memory, attention, or difficulty speaking, so patience is paramount. Once they can communicate, offer a brief, factual explanation of what happened, which can help reduce their fear and sense of lost control. Avoid lengthy descriptions or emotional language about the event and instead focus on helping them sit up in a safe place.
General Supportive Language and Offering Assistance
When discussing epilepsy in a non-crisis setting, always prioritize the person over the condition by using person-first language, such as “a person with epilepsy” rather than “an epileptic.” This shift acknowledges that their condition does not define their identity. Supportive communication involves actively listening to their experiences and respecting their boundaries.
Treating the person normally is paramount, but acknowledging their condition when appropriate demonstrates that you are a reliable source of support. Instead of making broad, vague offers like, “Let me know if you ever need anything,” offer specific, practical forms of help. You might ask, “How can I best support you with transportation to appointments?”
Open-ended questions about their experience, asked only if they initiate the conversation, can show genuine interest without being intrusive. For example, you could ask what their seizure recovery usually involves or what their care plan outlines for others to follow. This approach validates their lived experience and ensures that any assistance you provide is helpful and desired.
Unhelpful Comments and Questions to Avoid
Certain comments, though sometimes well-intentioned, can be insensitive, stigmatizing, or dismissive of a person’s experience with epilepsy. A common error is questioning the severity of their condition with comparisons such as, “At least it’s not cancer,” which minimizes the impact epilepsy has on their daily life and well-being. Similarly, avoid clichés like, “It could be worse.”
Never suggest a link between epilepsy and possession or mental illness. Avoid asking about unproven treatments like, “Have you tried [an untested remedy]?” Such questions imply that the person has not adequately sought help or that their medical condition is within their control. Refrain from asking about personal aspects like driving privileges or employment status unless the information is relevant to a specific shared task.
Avoid using the outdated term “having a fit,” as it can be derogatory and is often associated with a lack of control. Do not make assumptions about their triggers, such as asking, “Should I turn off the flash?” since only a small percentage of people with epilepsy have photosensitive seizures. The best practice is to avoid unsolicited advice or invasive questions and focus on treating the person with respect.