Epilepsy and Access to Mental Healthcare

Content Note: This article describes suicide and abuse. If you or a loved one are struggling, consider reading our mental health resources page.

This year marked the 42nd year since I was diagnosed with epilepsy. I have been very lucky that despite the challenges I have faced, I haven't lost consciousness since 2004. Due to my seizures being controlled, I have had the privilege of enjoying many things in life that some people with epilepsy cannot – such as driving or having the means to obtain a higher education.

It is the main reason that I do what I can to advocate for the community. I want to see more people with epilepsy have better economic and educational opportunities and have the quality of life they truly deserve.

Lack of access to mental health help

One thing that has been a challenge for many with epilepsy, including myself, is getting access to mental healthcare. Due to the side effects of medication, lack of socialization, trauma, and other challenges that some people with epilepsy face, many people with epilepsy experience anxiety, depression, and post-traumatic stress disorder.

Many healthcare plans do not provide adequate coverage for mental health counseling, and many cannot afford the out-of-pocket expenses. The result is many not being able to get the help they need, which long-term, has a negative impact on their life.

Higher rates of suicide in people with epilepsy

I have for a long time been expressing my concerns about the negative impact the lack of mental healthcare has had on our community. In 2016, the article "Suicide among people with epilepsy: A population-based analysis of data from the U.S. National Violent Death Reporting System, 17 states, 2003-2011" was published in Epilepsy and Behavior. I knew already that we had a higher suicide rate in our community, but after reading this study, it was a clear eyeopener that our community was in serious need of gaining access to better mental healthcare.

According to the study, after collecting data from 2003-2011 in 17 states, the authors of the study stated that the estimate annual suicide mortality rate among people with epilepsy was 16.89/100,000 per persons, 22 times higher than the general population.¹

A mental health crisis

Seeing those statistics shows that our community is in a mental health crisis and that the needs of our community are being ignored.

The highest group to die by suicide was between the ages of 40-49, and out of the methods used, poisoning was twice as likely compared to firearms, hanging, or strangulation. As dark as these facts are, one must ask why is this not being addressed. Why are we not advocating for better care? It is one thing to "bring awareness" to epilepsy, it is another to really address the problems our community has been facing for a long time.

My own experience with suicide

My reason for writing about this topic is I have attempted suicide twice in my life as a teenager. Due to the toxic side effects of Depakene and living in an abusive household, my mental wellness was non-existent. My teenage years were some of the darkest times in my life and battling mental illness while being in an abusive home aged me. It made me feel like I was in a constant state of fight or flight.

The trauma that I sustained in my childhood resurfaces at times and certain things can trigger me to become aggressive. The one thing that has helped me in healing is being able to see a psychologist. I see my psychologist every 1 to 2 times a month, depending on how I am doing. Some people would be hesitant to share that they are seeking mental health help, but it is something I know will be a part of my life until I die.

I know in order to be well, I must use all of the tools I have to be well, and that includes focusing on my mental health.

You are not alone

If you are struggling with your mental health, do not hesitate to reach out for help. As human beings, we all have challenges. Do not feel any fear or shame if you need someone to talk to. If you are worried others will judge you, at the end of the day, their opinion does not matter, your health and well-being does.

It took me many years to realize this, and I hope in sharing this, many will realize it a lot sooner than I did. Epilepsy is not an easy thing to live with, but everyone deserves to live their lives to the fullest, even those with epilepsy. Love yourself and don't be afraid to ask for help if you truly need it.