Having been a person who hid her epilepsy for many years, I know how important people's responses are to hearing about your epilepsy for the first time. What are the ideal words to hear and emotional responses to feel from others when you tell them? What reactions make you want to curl up into a fetal position and burrow?
Well treating me like like I'm a normal human is always a good start. Allot of people when they found out I have epilepsy treated me like I was someone else and dumb. That's not cool. The best way to react for me anyway is to ask how to best support. For example helping me to remember things
I understand, what should I do if you have a seizure
I answe% and get back to whatever I /we are doing
I have worked at my workplace for 9 years now and (touch woood) never had a seizure at work , they have all been at home , so I have been really lucky that way , but in another I feel that sometimes other staff don't take my epilepsy seriously or maybe even believe it . It's been a year now since my last seizure so I am doing well.
@A MyEpilepsyTeam Member I do not fear my epilepsy, I just have been through a lot included being discriminated against on the job and trying to find a job. I have been advised by some to be careful who I share my epilepsy with and when it comes to employers, wait until hired before telling them about it. I have been told I may want to wait until I build a working relationship with the employer before telling them about it. This way they have had a chance to get to know me before finding out about the medical problem. I managed to work for three employers who were not too concerned about my epilepsy....law enforcement, a grocery store, and a retail store. We all have to what we think is best for us. For you, David, being open and up front works best. For me, allowing the employer to get to know me has worked best. I was discriminated against multiple times by different employers. Some I could have cared less, one in particular I made sure they paid dearly to the state.
I don't typically tell people about my epilepsy until they have had a chance to get to know me and see what I am able to do for a committee or board that I volunteer on. And even then I may still not share it with them. Although when some kids in our youth program were found out to have epilepsy, the parents were concerned about allowing their kids to participate because they did not think the leaders would handle things appropriately. So I discussed things with them and asked what type of seizures their kids have, what type of epilepsy have, and what kind of experience I have. This put them at ease. We have posters and other first aid methods for seizure disorders. We have first aid posters for every illness that kids come into our program with. We also receive training from medical professionals about different medical issues we have not had training in when a new medical illness comes along. This makes parents feel so much easier and we go through updated training every few years to keep everyone on the same page.
We never share your personal information with anyone.