So I Was Just Diagnosed With Epilepsy… Now What?
“...in order to see the change, you have to be the change.”
Receiving a diagnosis of an incurable brain disorder is heavy. To come out of a doctors office with a brand new, often confusing diagnosis is not fun by any stretch of the imagination. It’s not easy, either. Epilepsy doesn’t discriminate–anyone can be diagnosed at any age regardless of race, sex, or societal class. I have noticed, though, that those with epilepsy tend to be some of the strongest people I know.
I was diagnosed with a seizure disorder when I was only nine. My family and I weren’t given any tools on how to navigate the disease or how to cope with a chronic diagnosis, so I’ve compiled my list on what I wish I knew when I was diagnosed.
Firstly, I’d like to clarify: it does not matter if you are a child when you receive a diagnosis, or an adult. Epilepsy is scary and quite confusing. It is more than normal to have a million questions, here’s what I wish I knew:
There are many different types of epilepsies. Epilepsy is not a one size fits all. If you receive an “epilepsy” diagnosis, please ask your neurologist to clarify to the best of their ability to prevent any confusion. The more you know about your diagnosis, the more clarity you can have on how to continue on with your life. This comes with further testing such as EEG monitoring and potentially genetic testing, but this can give you clarity on what triggers your seizures and what doesn’t. There is no point in further restricting yourself from life out of fear if there is no underlying concern or trigger.
Find a mentor. If I could emphasize anything, it would be this. You are not alone in this journey. There are many, many people that have epilepsy. To find someone who can relate to you in some sense will transform your mental health. I noticed strides in my personal life when I started opening up about my journey with epilepsy. It took me over a decade of silence to share but when I did, I felt freed. Mentors can be role models, as well. Having someone show you that anything is possible even with epilepsy can help in such a significant way–I cannot recommend enough!
Be your own advocate. No one will fight for you like you will. No one will treat you with more respect than you can. Take all you know about your diagnosis, and dig deep. Finding your voice can be tough, especially when working through a new life change, but finding your voice will be life changing. Every day I tell myself, “Laura, in order to see the change, you have to be the change”. Whether through a new diagnosis, navigating a rocky point in a relationship, or mustering the will to study for an exam, you have to be the change. Nothing changes if nothing changes! The good news is, epilepsy warriors are built differently. Epilepsy breeds resiliency, grit, and hope.
You are not a victim when you have the power to be a victor. For over half of my diagnosis, I believed I was limited. This is the furthest from the truth. Sure, life has limits. We have to learn how to live life with specific limits others might not necessarily have to keep us safe, but that in no way means we are not as capable as your neighbors. We may not be in control of our brain at all times, but we do have the power to control our mindset. Choose victory. Choose positivity. There is time to grieve–absoultely–but we cannot stay there. Soak in the grief, then stand up. Conquer your day. One step at a time. You’ve got this, I know you do.
Get a second opinion. If you were diagnosed with a seizure disorder or epilepsy, I am almost certain a different neurologist will tell you, broadly, the same thing. The difference is in the care. Neurologists, like humans, have different ways they will approach scenarios. Find a neurologist or epileptologist that aligns with your view of treatment. Do you feel you are getting your questions answered? Do you feel they are genuinely listening to you? Do they have your best interests in mind? These are all pertinent questions to ask as you find a doctor to care for your health. This goes in line a bit with self-advocacy, and I could not recommend it more.
Let me be clear: I am only one person with epilepsy and I have not experienced the whole spectrum of seizures, but I am someone who cares deeply. I have seen a lot, been through much grief, and still choose to persevere. If you have any questions or comments, please reach out to me! My goal is to represent epilepsy as authentically as possible.
Have a safe and seizure free day :)
-Laura