Home » Epilepsy Blog » About Epilepsy » Stigma » Epilepsy Blog Relay: Epilepsy Stigma in Teens and Adults

Epilepsy Blog Relay: Epilepsy Stigma in Teens and Adults

At Living Well With Epilepsy we’ve looked at epilepsy stigma over the past few years through several surveys and wanted to take a few minutes to share with you what we have found. Included you will find similarities and differences in how teens and adults respond to epilepsy stigma.

Epilepsy Stigma Surveys

In 2019 I ran a survey asking questions on epilepsy stigma between 6/3/2019 and 6/25/2019 and gathered 200 responses. 85% of the respondents were female, 12% male, and 3% gender diverse. Additionally 60% of the respondents were under the age 18. Respondents were driven to the survey via LivingWellWithEpilepsy.com, Instagram, and Facebook. No participants were paid, all participation was voluntary.

Then in 2022, I ran a very similar survey on epilepsy stigma however, NONE of the respondents were under the age of 18. This second Epilepsy Stigma Survey ran between 4/11/2022 and 6/13/2022 and gathered 53 responses. 66% of the respondents were female, 32% were male and 2% were gender diverse.  Respondents ages ranged from 18-65+, with 38% in the range of 35-44. Respondents were driven to the survey via LivingWellWithEpilepsy.com, Instagram, and Facebook. No participants were paid, all participation was voluntary. Currently the survey is still open.

The Survey Results

Below I have included a few graphics to show the similarities and differences in responses. In both surveys we asked the following:

Are you ever embarrassed by your epilepsy?

A resounding 83% of teens (13-18) responded yes, they are embarrassed by their epilepsy. However, when only adults ranging from 18-65+ were asked the same question, the answer was still yes, but from a much lower 54% of the respondents.

Are you ever embarrassed by your epilepsy?

Do you try to hide your epilepsy?

When asked if they try to hide their epilepsy, 67% of teens (13-18) responded yes. Correspondingly, adults ranging from 18-65+ were 45% responded yes to the same question.

Do you try to hide your epilepsy?

Do attitudes about epilepsy prevent you from doing things you love?

When asked if attitudes about epilepsy prevented survey participants from doing things they love 66% of teens (13-18) responded yes. Whereas, 47% of respondents in the adult only version of the survey, adults ranging from 18-65+, responded yes to the same question.

A Difference in Attitudes on Epilepsy Stigma

Teens and Adults diverged when it came to the lengths they were willing to go to hide their epilepsy. I asked the following questions in each survey and found vastly different responses:

Do you hide your epilepsy from those you date?

When it came to dating, 50% of teens (13-18) responded yes they hide their epilepsy from those they date. However, a resounding 86% of respondents in the adult only version of the survey, adults ranging from 18-65+, said no, they do not hide their epilepsy from those they date.

Do you hide your epilepsy from those you date?

 

Do you hide your epilepsy from co-workers?

Similarly when it came to work, 50% of teens (13-18) responded yes they hide their epilepsy from their co-workers. However, 73% of respondents in the adult only version of the survey, adults ranging from 18-65+, said no, they do not hide their epilepsy from those they date.

Do you hide your epilepsy from your co-workers?

Learn More

If you are interested in learning more about the survey results or discussing the possibility of running a survey in conjunction with LivingWellWithEpilepsy.com just email me at jessica@livingwellwithepilepsy.com.

If you just are curious to take the survey, feel free to visit the home page, and take the survey yourself.

 

Leave a Reply

Your email address will not be published.

This site uses Akismet to reduce spam. Learn how your comment data is processed.