You’re Not Alone: Overcoming an Epilepsy Diagnosis

Managing epilepsy and its every day obstacles can be very difficult. However, the epilepsy community is not alone. Many individuals speak up and share their stories to highlight what it means to have epilepsy. 

Lowell G. Evans, a regional director of the Epilepsy Foundation in Virginia, has used his experiences with discrimination to help other people with epilepsy feel welcome in the community.

Lowell’s Experience Sharing His Diagnosis

Lowell began his own journey with epilepsy in 1980 when he was in college. “There were very few resources for me to turn to when I was first diagnosed. There was little information about epilepsy available, I was at a loss,” said Lowell. “The African Americans I knew were not willing to talk about epilepsy and they were not familiar with it either. Most of all, I was told that if you were Black, you should not talk about epilepsy.” 

Lowell has also shared some of the unfortunate realities of being open about his diagnosis around other people who were not familiar with epilepsy. “People felt that individuals with epilepsy were possessed by demons,” said Lowell, referring to a common stereotype that many with epilepsy still hear. “As for discrimination, I was not invited to events, not given opportunities for jobs, and some women did not think that I would be a good catch! People with epilepsy were seen as ‘different’ than everyone else.” In Lowell’s opinion, this “labeling” caused people with epilepsy to not have the same opportunities as everyone else. 

Lowell also described feeling a bit depressed when he was initially diagnosed with epilepsy because he felt that some people were ostracizing him after witnessing his seizures. 

Overcoming Difficulties and Making the Most of His Diagnosis

Despite these experiences, Lowell was determined to prove that having epilepsy was not something to be ashamed of. “I feel that people need to be educated about epilepsy because they need to know the truth about the condition,” said Lowell. “I have helped many overcome the challenges of their epilepsy and live successful lives. I have graduated from college, have a wonderful wife, became a father, and I’ve had a successful career. I have even written a book about epilepsy that has sold all over the world.” 

Lowell believes that seeing other people with epilepsy succeed will encourage others to do the same despite challenges. Lowell’s ultimate dream is for his book to one day be turned into a movie so that it can educate all people about epilepsy as well as teach the world that people with epilepsy can be successful in life. 

If you feel you are having trouble overcoming challenges related to seizures and epilepsy, know that there are people here to help. We encourage you to connect to our 24/7 Helpline online or by phone at 800-332-1000. You can also reach us en español at 1-866-748-8008. 

If you’d like to learn more about Lowell and his journey with epilepsy, you can read more about him in his eJourney story.