It was June 2024 and a friend asked me how is your men's mental health month going? If only he knew. I wish I could have told him the truth. Struggling to know when the next seizure would happen, wondering of the long-term effects, change in diagnosis, certainly the stigma associated, and life expectancy. I SOOO wanted to share but I couldn't.
His question came from a genuine place. He truly cared how I was doing and he shared some materials that were very helpful and generally applicable to mental health... But if he only knew. Epilepsy attacks from the inside and outside. More and more continues to be learned and it is publicized that one in 26 have epilepsy. Part of me wonders if the numbers would be higher should more be willing to disclose. We are like transformers, more than meets the eyes. We live amongst those who may not see us. Nor do we want them to know.
I had my first seizure in 2017 not knowing that it was a seizure. I began to journal it immediately as it was a very different feeling. As the episodes increased in frequency I knew something needed to be done. My wife knew something was not right but has always been amazingly supportive and protective of the diagnosis. I feel that I am blessed with a type of epilepsy that is very manageable. I started with a neurologist and a friend (Leigh) made a suggestion to start going to a level 4 epilepsy center. The difference has been palpable with specialists that are focused on epilepsy. I drive 2 hours each way to get there but it is well worth it. I just got to a point where medication (knock on wood) has made me without a seizure in about 10 weeks. It's taken about 7 years to get to this point. I have been on different medications but had concerns around irritability and other side effects. My care team has assured me that some of the irritability is being a parent of three, haha.
To date, there are four people that I have told. Including my wife, parents, and one confidentially to help a parent of a child who has epilepsy. My sister accidentally found out much to my chagrin. My parents thought I had already told her and it surprised her. I can imagine what was going through her head. Why didn't my brother tell me? How concerned should I be? Does he or doesn't he want to talk about it now that I know?
There are many reasons I don't share. Some are:
There are those that are worse off than me.
There are kids that are suffering with a multitude of diagnoses.
I don't want to complain.
What would people think of me?
How would I be treated differently if they knew?
Maybe someday I will grow comfortable with sharing. Someday the stigma will lessen. Someday there will be more advanced research. But we cannot focus on the someday. Today is here and we have the opportunity to make a difference in the lives of those with and without epilepsy.
To my epileptic brethren, continue to fight the good fight! Use your resources and if you can, DON'T LET EPILEPSY DEFINE YOU. You are not alone and are bigger than your diagnosis.
-Anonymous
(Because I have to be)
From Empowering Epilepsy: We hope you choose to reach out to Empowering Epilepsy to learn more about your diagnosis and treatment plan and help get your seizures under better control sooner. There are a variety of confidential ways we can help you empower your life. Click the links below to learn more or contact Leigh Goldie at Empowering Epilepsy for more information.
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Thank you so much for sharing, what a powerful story!