5 Tips to Help You Survive the First Year

Does it feel like everything is spiraling out of control? Are you afraid to even close your eyes?

You are not alone — and it is absolutely normal to feel this way.

Navigating your first year with epilepsy is never easy. You’re learning new medical terms, adapting to lifestyle changes, and trying to maintain a sense of individuality all at once. It can feel overwhelming. I hope this article helps you feel supported and a little less alone on your journey.

Finding out you have Epilepsy

First, what is epilepsy?

Epilepsy is a neurological condition diagnosed when someone has more than one unprovoked seizure in their lifetime. Anyone — regardless of gender or race/ethnicity — can be diagnosed with epilepsy. While many people assume epilepsy is always genetic, the truth is that in many cases, the exact cause is unknown.

5 Tips to help you navigate your first year

1. Don’t go down the rabbit hole

When you first hear the diagnosis, it can feel like your world is collapsing with no solution in sight. In today’s world, it’s incredibly easy to search everything online. Sometimes it even feels easier than paying thousands of dollars for a short medical appointment.

While the internet can be helpful, it can also create more fear and confusion. Even reputable sites can overwhelm you with worst-case scenarios. Research is important — but spiraling into endless searches often increases anxiety instead of relieving it. Be mindful of how much information you consume, especially in the beginning.

2. Become your own advocate

It’s essential to advocate for yourself.

Neurologists and epileptologists explain your diagnosis, but sometimes those explanations feel rushed or incomplete. You may hear terms like “epilepsy” and “seizures” without fully understanding what that means for you. What type of seizures do you have? What do they look like? How often might they happen? What are possible triggers?

If something isn’t clear, ask. If you need clarification, ask again. You deserve detailed answers about your own health.

Being your own advocate means speaking up, asking questions, and making sure you understand your treatment plan. You would stand up for someone you love — give yourself that same energy.

3. Feel your emotions

It might feel easier to isolate yourself while you process this new reality. But hiding away often hurts more than it protects.

Whether you were born with epilepsy or diagnosed later in life, questions about identity can surface. You may wonder, “Why me?” Even with supportive friends and family, you might feel like you don’t want to burden them — especially if you don’t know anyone else with epilepsy.

It can feel like a battle only you understand.

If that’s how you feel, know this: your emotions are valid. There is nothing wrong with feeling frustrated, scared, or even angry. Let yourself feel it. If you don’t have someone to talk to, consider finding a creative outlet — journaling, art, music, or movement can help regulate your emotions and give you space to process.

4. Practice self-care

Self-care is not optional when living with epilepsy — it’s essential.

It’s easy to get so focused on understanding your diagnosis that you neglect basic care. Simple things like showering, brushing your hair, eating regularly, and resting matter more than you realize.

Managing epilepsy requires caring for your whole self — physically and emotionally. Saying no to an event, canceling plans because of a headache, or resting when you feel off is not selfish. Every headache, migraine, or anxiety episode you experience is valid.

Taking care of yourself is part of managing epilepsy.

5. Keep a seizure journal

When you’re diagnosed, start tracking your seizures. You can use a notebook or your phone.

Write down:

Date and time

Duration

Whether you lost consciousness

What you felt before (auras or warning signs)

How you felt afterward

Possible triggers

This journal becomes one of your strongest tools. It helps you understand patterns, recognize triggers, and identify warning signs. It also provides valuable information for your neurologist or epileptologist.

Over time, you’ll begin to understand your epilepsy better — and that knowledge can help you feel more in control.

Final thoughts

Adjusting to epilepsy takes time. Some days will feel manageable; others may feel overwhelming. But you are not alone in this journey. There is strength in learning, advocating for yourself, feeling your emotions, and caring for your body.

Give yourself grace. Healing and adjustment are not linear — and that’s okay.