(This article is an informational and personal experience article only. If you have any symptoms or questions related to your health, talk to your neurologist, nurse, or local doctor first. This post contains affiliate links. As an Amazon Associate, I earn from qualified purchases.)
Living with epilepsy is more than managing seizures — it also means dealing with the emotional, social, and mental health challenges that come with it. Explaining all of this to loved ones can be daunting. Whether it’s your family, partner, or close friends, helping them understand what you go through is important for building a strong support system.
In this blog post, we’ll break down how to talk about epilepsy and mental health in ways that are clear, honest, and understandable — even when it feels difficult.
Why These Conversations Matter
Epilepsy doesn’t exist in isolation. For many, it comes with anxiety, depression, memory issues, and emotional stress. Studies show that people with epilepsy are at a higher risk for mental health challenges due to both neurological and social factors.
When your loved ones understand this, they’re more likely to respond with empathy rather than confusion or fear. These conversations can:
- Reduce misunderstandings
- Strengthen your relationships
- Encourage emotional and practical support
Promote early intervention for mental health symptoms
1. Start with the Basics: What Is Epilepsy?
Don’t assume people know what epilepsy actually is. Use simple language to explain that epilepsy is a neurological condition where the brain’s electrical activity becomes disrupted, causing seizures. Explain that there are many types of seizures, and each person’s experience is different.
2. Address Common Myths and Stigma
Many people still hold outdated or incorrect beliefs about epilepsy. Gently correct myths like:
- “You can swallow your tongue during a seizure” (False)
- “Epilepsy is always inherited” (Not always)
- “People with epilepsy can’t live normal lives” (Not true at all)
I had a lot of family and friends who did not understand epilepsy and ways to help me. In school, no one, not even my teachers, knew what to do when I had a seizure in class. I still have loved ones who don’t fully understand epilepsy and that I can have a life like other people.
3. Connect the Dots Between Epilepsy and Mental Health
This is where vulnerability meets education. Explain that dealing with seizures, unpredictability, and social stigma can really hurt mentally. Let them know that anxiety, depression, or mood swings are not signs of weakness, they are part of the big picture.
The seizures I had in public made me insecure and embarrassed, and it took time, with the help of family and friends, to grow past that and live my life to the fullest
4. Be Clear About Your Needs
Your loved ones want to help, but they might not know how. Be specific:
- “When I’m having a rough mental health day, I might not text back right away — it’s not personal.”
- “If I have a seizure, here’s what to do…”
- “Sometimes, I need a quiet space to calm my anxiety.”
Clear communication builds trust and reduces guesswork.
5. Share Resources Together
Sometimes it helps to take the pressure off yourself as the only “explainer.” Share resources such as:
- Epilepsy Foundation – for medical info and first aid guidance
- Mental Health America – for mental wellness support
- Personal blogs or videos from others with epilepsy
This creates shared understanding and opens the door to ongoing discussion about your epilepsy and epilepsy itself.
6. Practice Patience — For Them and Yourself
People may not fully understand right away, and that’s okay. Education is a process, not a one-time event. Be patient with their questions and reactions. And give yourself credit; you’re doing the hard work of self-advocacy, which is extremely brave.
Final Thoughts: You Deserve to Be Understood
Living with epilepsy and navigating mental health needs is challenging, but you don’t have to do it alone. Open, honest conversations with your loved ones can turn fear into understanding and isolation into support.
Remember: You are not a burden. Your story matters. And the more we talk, the more we break the stigma.
If you have dealt with this and have your own experience on dealing with this, leave a comment and let us know how to conquered the challenge.
John is a person who has been diagnosed with epilepsy since the age of 8. John has been a certified peer recovery specialist in the state of Iowa since 2019. John also has training in ASIST (Applied Suicide Intervention Skills Training).
John loves art, comics (Marvel especially), and the UI Hawkeyes. John lives in a small town with his 3 furry brothers Louie, Mario (Dogs), Leo (Cat), and fury sister Nova (Cat).
(This article is an informational and personal experience article only. If you have any symptoms or questions related to your health, talk to your neurologist, nurse, or local doctor first. This post contains affiliate links. As an Amazon Associate, I earn from qualified purchases.)