By Amber Kaiser

Those of us who have experienced seizures and epilepsy in some way, whether temporarily or life-long and debilitating, I think we can all relate to being stigmatized in some way at some point in our lives. Even when people don’t see the seizures, if you share that you have epilepsy with them or they find out you have epilepsy through witnessing a seizure, the stereotypical stigma can start whether it’s intended by the other person or not. In the beginning, I rarely talked with anyone about having epilepsy and especially not in the workplace. However, I experienced the stigma the first time I mentioned having epilepsy at a job I had very early in my career and was let go. That made me even more fearful about ever mentioning the word around people. Unfortunately, epilepsy and stigma often go hand-in-hand.

Common epilepsy stigmas

Naturally and understandably, unless you work in the medical field or are already aware of epilepsy, most people feel scared when they are around someone who is having a generalized seizure (more people associate epilepsy with this type of seizure; the person becomes unconscious and starts shaking and losing control of their body functions). If a seizure lasts more than 5 minutes (and there are actually many different types of seizures) that is when you call 911. After the person experiences a seizure whether it's an unconscious (generalized onset) or a conscious seizure (now called focal onset aware or impaired awareness also known as simple partial/complex partial), the hardest part is after—the brain and body recovering, the memory challenges and brain working differently, going back to school, returning to work or visiting the last place they were at in their everyday routine—suddenly, they may notice people treating them differently, being less open, or not interested in getting to know them anymore. I think the general public often reacts out of fear of the unknown, epilepsy is still not widely talked about or understood so people commonly tend to be hesitant and less social about what they don’t know or have experience in.

What to do when you experience the stigma

The most helpful thing we can do in the epilepsy community is continue to talk about it when we feel comfortable to help educate people—let friends, colleagues, teachers and even family know not to be afraid to ask you questions and offer to guide them on what to do if you have a seizure especially if you have generalized onset or impaired awareness seizures around them. You can also let them know about the easy and helpful Epilepsy Foundation and Epilepsy Alliance America online seizure certification programs and epilepsy support services.

If you experience the silence, the bullying in school, getting laid off from a job, or some other action as a result of people learning about your epilepsy, it can be very tough to feel okay with yourself. Experiencing negative and unhelpful reactions from other people can make any isolation due to epilepsy even worse. If you ever find yourself in these circumstances or know someone who has, I highly recommend calling the Epilepsy Foundation’s free, 24/7 epilepsy helpline at 1-800-332-1000. They have “trained information specialists standing by to answer your questions about epilepsy and seizures and provide you with help, hope, support, guidance, and access to national and local resources.” The challenge is that many people don’t know about this resource and if you are reading this and you know someone who has epilepsy please let them know!

Also, speaking from experience, remember that when others’ reactions happen, no matter how difficult it is, in the “big picture” of your life, it is often meant to be and your life is realigning itself to a better place even when you don’t see it at the time. The quickest way for you to get to a better place (again, I learned this from my own experience and it’s easier when you find the courage to open up and live your epilepsy truth faster) is to learn to accept your diagnosis and start living your life as healthfully as you can—reduce stress wherever you can in your life, ask for help from people you feel safe with and who you know are open to helping you, do what you can to get good sleep every night, make sure your doctor is helpful and be open to taking notes and asking questions, don’t be afraid to find a new neurologist or epileptologist if you don’t like your current doctor, reduce stress where you can in your work, consider finding epilepsy support groups or epilepsy support groups online especially if you don’t have an emotional or financial support system, and this is worth repeating—do whatever you can to get closer to accepting epilepsy in your life. Finding an epilepsy support group for adults may help you get there by connecting with others who understand you.

It will save you so much pain and heartache and help you open up to talking about it. When you get to a place where you feel comfortable in your health and daily seizure management, start trying to be open to talking about epilepsy in a safe environment and meeting other people with epilepsy and even volunteering if you can. There have been a lot more epilepsy resources and groups created even within the last 5 years! The industry is continuing to grow and at-home devices are finally becoming available including Neureka Sleep if you or a loved one is experiencing nocturnal seizures (seizures while you are sleeping).

How we can conquer the stigma together

We can help conquer the social stigma of epilepsy by getting more comfortable with ourselves and being open to talking about it to help educate people and make sure they feel comfortable around you. Also, if you are on social media, consider following epilepsy community groups like Brain Ablaze and SUDEP organizations like Danny Did Foundation, Chelsea Hutchison Foundation and Purple Peace Foundation. Miles Levin is also working on creating his award winning short, Under the Lights, into a feature film to help spread epilepsy awareness on a massive scale and close the gap. 

There are many ways to get involved and become an epilepsy advocate in your life. We don’t like epilepsy, but it is possible to eventually learn to accept something that’s out of our control and to take that energy to help spread the word and educate the general public in seizure awareness and connect with each other instead!