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“Letters to My Younger Self’ are written by epilepsy patients and caregivers, highlighting what they wished they had known at the onset of their journey toward seizure freedom. In the letter below, Dr. John B. Ingram, pediatric epileptologist at the University of Mississippi Medical Center, shares his own experiences as a teenager diagnosed with epilepsy at age 16, and what he now tries to stress to his patients.
My doctor, in response to my relative hopelessness at being diagnosed at 16 years old with such a daunting disease, looked at me in the eye and remarked, “Young man, you have epilepsy. You can’t let it have you!” She shared all of the following, but most of it had to be realized organically as I wrestled with my diagnosis. How much time did I waste before these truths were a part of my understanding of being an epilepsy patient? Now, as a pediatric epileptologist, these are topics that I try to stress to my patients.
You are NOT defined or identified primarily by this disease. Don’t believe you have a name tag on with EPILEPTIC in big red letters. While a seizure disorder may reframe how you will live your life, and change some things that others take for granted, you mustn’t let it be the prism through which you live every experience and make every decision. In many ways, the lessons I learned from my epilepsy about how to treat people, about courage in the face of adversity, about myself and what really matters about life, have been an unexpected positive.
Information is POWER. Don’t hide from the diagnosis; learn about it. Find people who know more about the disease. Call or visit the website of your local Epilepsy Foundation (or other advocacy group). Epilepsy can be very isolating, but it shouldn’t be. Find mentors who understand what you and your family are going through. It’s very common, and there are numerous resources to keep you informed. It can be a scary disease— be empowered, knowledgeable, ask about things you don’t understand.
Find a doctor that you like, even if that takes time. This was the most important piece of my early experience with my diagnosis. Understand that epilepsy is a difficult field, and not all health care professionals are comfortable with patients who have seizures. Know that the medications, devices, diets, genetics, and surgical evaluations are always changing and require someone who spends a lot of their life learning about managing epilepsy. Find someone who will see you as more than your seizures. Don’t stop searching until you’re with a health care professional who will explore how to accomplish your hopes and dreams, even if these look modified.
It’s ok to get mad. It’s ok to grieve and to mourn. You will find out who is going to stick by you with this new diagnosis, and that will likely surprise and hurt you. You may feel as if your plans and expectations are unachievable. What you took for granted will now seem hard or impossible. These are appropriate feelings and are unfortunately very common in patients with new onset seizures. Look for people who have done this before for guidance. If appropriate, find a counselor to unpack these feelings with you. It’s all too common for patients, especially teenagers, to respond to the diagnosis, but struggle with how they’re coping with a new diagnosis.
Lastly, as you become comfortable with your diagnosis, advocate for yourself and others. Look for a chance to educate those around you. If you’re freaked out by this, they will be too. If you’re knowledgeable and willing to talk about it (even the embarrassing parts), they will likely be interested in hearing from you. Know that there will always be someone new to the disease who will be going through the same struggles, and you may be the only person in their life empowered to help them. Your story, in its immediacy, can feel crushing, but it may, one day, be another person’s life raft as they adjust to their own diagnosis.
Managing epilepsy is an everyday thing—but lapses can happen. To learn more visit Epilapsey.com.