Epilepsy: Coping with a New Diagnosis

Learning how to cope with a new epilepsy diagnosis is just as important as treating it. It may affect your daily life to some degree and being aware of its emotional impact can help you better manage your condition and everyday living.

Life is unpredictable. One of the many challenges of dealing with a life-changing diagnosis is not knowing how it will affect you. In the beginning, epilepsy can be a bumpy journey. Everyone will cope differently, but once you establish a better understanding of your diagnosis, everyday life with epilepsy will likely become easier. It is completely normal to experience emotional highs or lows, but be sure to share them with your health care provider (HCP).

What are some things I can do to cope?

It is important to educate yourself on your new diagnosis, as this will help you in your journey. You may choose to do this alone or with friends and family. Most teens find it helpful to include their friends and family. That way everyone can learn together, while supporting each other. However, it is completely up to you! You can educate yourself and others through the materials found on this website as well as through the Epilepsy Foundation.

I want to meet others with epilepsy, is this possible?

Yes, joining a support group for teens can be a great source of support from other people with epilepsy who are managing a similar diagnosis. Support groups are a great source of empowerment, providing you with confidence – which can help you accept your diagnosis. Check out the Epilepsy Foundation for support groups near you!

Is it OK to ask for help?

Yes, talking with people about your epilepsy is an important part of dealing with the diagnosis. Be open and honest with others and allow them to ask questions. You may also find it helpful to talk with a counselor, close friend or family member, or your health care provider (HCP) to help you work through any difficult feelings. It is important to remember that difficult feelings are normal and may come in waves.

Is it OK to embrace my diagnosis?

Yes! Although having epilepsy may feel overwhelming at times, you can still live a full, active, and rewarding life. It’s not uncommon for people living with epilepsy to feel anxious about going out in public in fear they may have a seizure. However, it is important to keep in mind that despite taking medications and modifying your lifestyle, seizures still may occur. Unfortunately, sometimes there is not much you can do, but it’s important to continue living your life. Remember, in general, people without epilepsy are genuinely helpful, concerned, and eager to learn more about your diagnosis.

How can I take care of myself during this time?

Self-acceptance, care, and love has never been more important than it is right now. Remember, epilepsy does not have to control your life; it is still YOUR life. Consider self-care activities such as meditation/relaxation exercises to help calm your mind. Engage in daily positive affirmations to boost confidence and calm negative thoughts. When you start to worry, take a few deep breaths and think of something positive, like an activity you enjoy or an important person in your life.

How can I take control of my life?

Seizures can cause a lot of anxiety and they are often unpredictable, but understanding how to manage them through lifestyle modification can help patients with epilepsy live more confidently and improve their quality of life. Remember to take your medication correctly and as prescribed. If you have questions about how to take your medications, contact your health care provider (HCP) right away. Your HCP will be able to answer any questions you have about your specific medications and how to take them. You may find it helpful to participate in regular daily exercise. Aside from exercise keeping you healthy, the endorphins (released during exercise) can also improve your mood! Another great tip is eating a diet that is healthy and well balanced as well as staying hydrated! Stick to a goal of drinking eight to one hundred ounces of water per day.

What are some seizure triggers?

Some people may have triggers, which means their seizures are caused by something outside the body such as stress, flashing lights, lack of sleep, caffeine, etc. If your seizures are triggered by stress, it’s important to learn your stress limits. This may help in managing the number of seizures you experience due to stress. If your seizures are triggered by a lack of sleep, try establishing a calming bedtime routine. This will help you fall asleep quicker and provide a consistent sleeping schedule. Try to aim for at least seven to nine hours of sleep each night. Sometimes, substances such as caffeine, alcohol, and tobacco can increase stress and anxiety. Talk with a trusted adult or your health care provider (HCP) to develop a plan to avoid using substances such as caffeine, alcohol, and or tobacco.

How can I maintain an independent lifestyle?

It’s important to stay as independent as possible. This will help you adjust to your new diagnosis and provide you with a sense of normalcy. Continue to participate in a consistent, daily routine (i.e. school, work, social activities). If you’re unable to continue working or attending in-person school, consider other activities to keep you socially engaged with others. State driving laws vary for people living with epilepsy, but if you are unable to drive, consider public transportation, taxis, or car services (Uber, Lyft) to maintain your daily routine.

Coping with a new life-changing diagnosis can be difficult, but these small steps can help you navigate through your journey.