“But you don’t look like you have Epilepsy”
I have heard this line more times than I would like. I cannot help but wonder, what does Epilepsy look like? What do people think we are supposed to look like? Do our faces or our bodies look different? If I showed you some faces, could you pick out who has seizures and who does not?
We are your 1 in 26 (U.S.) and we are your 1 in 103 (U.K) who have developed Epilepsy. Were you able to see the difference between yourself and us? Were you able to see similarities if you too have Epilepsy? Truth is, we are not different. Epilepsy does not have a target. Any one, at any age, of any background can develop Epilepsy. Epilepsy is not rare, we cane found anywhere. 65 million people around the world have epilepsy yet there is no definitive cure. There are ways to sustain ourselves and hope that one day it will go away – while for some people, they are able to overcome and become seizure free, others are not so lucky.
We live our days normally as everyone else. Some of us have families, work, go to school, and volunteer. We have hobbies too. We are people, just like you. We have feelings, just like you. But we face judgement, we face discrimination, we face the looks and the gasps. According to Science Daily; people with Epilepsy are more at risk for facing discrimination than those with other chronic health conditions (https://www.sciencedaily.com/releases/2016/09/160919103618.htm). But we keep going. We keep living our life, but more cautiously. Sometimes we may ask ourselves “why me” but at the end of the day, if it was not for Epilepsy, we would not be the people we are today. It may be part of us, but it is not us.
This is our reality.
These pictures range from just hours to a couple of days after the top images. Think about 26 people you know; within hours their life can change. It may come without warning, without cause. We live with uncertainty and worry. This is the reality of living with Epilepsy.
What else is part of our reality is SUDEP (Sudden Unexpected Death in Epilepsy). Those who are at risk according to the Center of Disease Control (CDC) are those with generalized tonic-clonic/grand mal seizures and those with uncontrolled seizures. Granted the chances are slim in controlled Epilepsy – 1 in 1,000. But for those with uncontrolled activity, the rate is 1 in 150 per year (http://www.epilepsy.com/learn/impact/mortality/sudep). SUDEP does not include deaths due to injuries from Epilepsy – just Epilepsy itself. Some of us wonder what if we become that ONE person? What if our friend or someone in our family becomes that ONE person? It is something that is in the back of most of our minds.
Even as time goes on, not everything fades
These photos range from 2.5 weeks to a month after a seizure that resulted in a hospitalization. We bare our marks and we do our best to bare them proudly. Some of us bare marks you cannot see – mental health issues are closely related to those with Epilepsy. With every person who questions “what happened” comes a story about our journey and the journey of others like us. If we can make one person understand Epilepsy and its severity, then we can make the world learn in time. Awareness is key and education is the door we need to get through in order to end discrimination and find a cure.
For more information and statistics/facts about epilepsy visit:
I want to give a huge thanks for everyone who as brave enough to share their pictures; click on the images below to visit some of their blogs and learn more about their journey