Epilepsy Foundation

I worked for a large retail store for fifteen years as a dept. management.  My seizures were under control for most of the time I was there.  The last four or five years they came back.  They started to increase when my supervisors decided that I needed to go.  I was liability.  I had several seizures at work and missed some work.  Now I know what they were doing was illegal, but like I said they are LARGE and know what they are doing.  To protect my job I went on disability a few times and eventually had brain surgery (Sept 2012)  Finally the process ended on March 9, I was terminated, for poor performance.  Now you would think if I wasn't doing my job they would have realized it 14 years ago.  I am ok with not working there any longer because it was causing me a lot of stress and who wants to be somewhere where they don't want to be.

I am currently looking for another job, but not telling my "maybe" employers that I have "E" or that I was fired.  I tell them my position was eliminated.  

Now for the reason why I am posting this, I wrote on facebook that I was no longer working at T----- and I would miss my T------ friends.  Friends commented and before I knew it I had said something about my "e".  I never posted about my illness before.  I realized later that day, when you post you can change who sees you post.  Mine was on public.  Which means anyone can type in my name and see what is on my wall.  I went and deleted all the posts about my job and "e".  I know that employers are asking for passwords and they are talking about changing laws, but remember a lot of people say "yes" to friends whether they know them or not.  It could be one of your friends.  Then they could have access to your facebook page.  Be careful what you post, it could effect you getting the job you want. 

Sorry so long,

Sandie

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Replies to This Discussion

I never type anything on facebook because of that. It said that you have to keep that and all up other information to your self it today world.

Yes, sometimes, I even feel that way about what I post on here. I don't want to be discriminated against at work. So, its hard when you have to keep seizures in the closet. I had one at work, and I was afraid that even my best friends at work might accidentally let it slip that I had a seizure. Discrimination is illegal, but its everywhere. I don't put anything on Facebook about it anymore, and today I'm going to go delete some old posts.

Thank you very much for the information Sandie.

I, basically, ignore FB. Why would anyone want to put all that information about themselves online? For all the world to see...?

I guess for me, FB is a way for me to stay connected to all of my friends and family around the world. We are closer because of it. We stay in touch with each others lives better than before. It's been a blessing for me because before my epilepsy diagnosis I had cancer. Im in remission now, but I've had to have many surgeries over the past three years. I was too exhausted or ill to contact everyone individually, but on FB one post could update everyone that loved me. The difference I'm learning the hard way now is that cancer is socially acceptable and understood. It's very supported and practically celebrated. Epilepsy is not. I was treated very well when I had cancer. Now, I face discrimination. Epilepsy is not understood. There are no commercials for us. It's more socially acceptable to have erectile dysfunction, I am discovering. So, I am learning the hard way. When I had cancer, people raised me up. Now they pity me, and they are perplexed. I get a lot of I'm sorrys if I try to explain. So now, I just keep it on the downlow.

Sandie, I am so sorry what happened to you. And you are correct, we all need to be careful what we post on FB, and be extremely careful how we have our accounts set up. Sallye, FB has been a huge help to me keeping in touch with family and friends as well.

Here is the thing though: google your name in quotes, and see what comes up. This entire conversation came up in Google. You don't even need to post epilepsy, just your name in quotes Sandie. So it isn't just face book you need to keep in mind. Just saying, if anyone is concerned about what they are saying online about their personal lives, etc., keep in mind everywhere you post. FB is actually more secure if you have your settings locked down than a lot of sites.

Thus, why I changed my name her from my full name to initials. 

S K said:

Sandie, I am so sorry what happened to you. And you are correct, we all need to be careful what we post on FB, and be extremely careful how we have our accounts set up. Sallye, FB has been a huge help to me keeping in touch with family and friends as well.

Here is the thing though: google your name in quotes, and see what comes up. This entire conversation came up in Google. You don't even need to post epilepsy, just your name in quotes Sandie. So it isn't just face book you need to keep in mind. Just saying, if anyone is concerned about what they are saying online about their personal lives, etc., keep in mind everywhere you post. FB is actually more secure if you have your settings locked down than a lot of sites.

SK,

  Thanks, and I really mean it.  I knew I could put my name in the computer and get a lot of information but I thought this was website was private.  Guess I was wrong. 

I use FB to keep in touch with friends and found some family members that I lost contact with.

I sometimes wonder is the advancement of technology worth everyone's privacy?



S K said:

Thus, why I changed my name her from my full name to initials. 

S K said:

Sandie, I am so sorry what happened to you. And you are correct, we all need to be careful what we post on FB, and be extremely careful how we have our accounts set up. Sallye, FB has been a huge help to me keeping in touch with family and friends as well.

Here is the thing though: google your name in quotes, and see what comes up. This entire conversation came up in Google. You don't even need to post epilepsy, just your name in quotes Sandie. So it isn't just face book you need to keep in mind. Just saying, if anyone is concerned about what they are saying online about their personal lives, etc., keep in mind everywhere you post. FB is actually more secure if you have your settings locked down than a lot of sites.

Thanks again.



S T said:

SK,

  Thanks, and I really mean it.  I knew I could put my name in the computer and get a lot of information but I thought this was website was private.  Guess I was wrong. 

I use FB to keep in touch with friends and found some family members that I lost contact with.

I sometimes wonder is the advancement of technology worth everyone's privacy?



S K said:

Thus, why I changed my name her from my full name to initials. 

S K said:

Sandie, I am so sorry what happened to you. And you are correct, we all need to be careful what we post on FB, and be extremely careful how we have our accounts set up. Sallye, FB has been a huge help to me keeping in touch with family and friends as well.

Here is the thing though: google your name in quotes, and see what comes up. This entire conversation came up in Google. You don't even need to post epilepsy, just your name in quotes Sandie. So it isn't just face book you need to keep in mind. Just saying, if anyone is concerned about what they are saying online about their personal lives, etc., keep in mind everywhere you post. FB is actually more secure if you have your settings locked down than a lot of sites.

You are very welcome. I hope I didn't sound smug in my post - some days I don't think I get the right tone across online.

S T said:

Thanks again.



S T said:

SK,

  Thanks, and I really mean it.  I knew I could put my name in the computer and get a lot of information but I thought this was website was private.  Guess I was wrong. 

I use FB to keep in touch with friends and found some family members that I lost contact with.

I sometimes wonder is the advancement of technology worth everyone's privacy?



S K said:

Thus, why I changed my name her from my full name to initials. 

S K said:

Sandie, I am so sorry what happened to you. And you are correct, we all need to be careful what we post on FB, and be extremely careful how we have our accounts set up. Sallye, FB has been a huge help to me keeping in touch with family and friends as well.

Here is the thing though: google your name in quotes, and see what comes up. This entire conversation came up in Google. You don't even need to post epilepsy, just your name in quotes Sandie. So it isn't just face book you need to keep in mind. Just saying, if anyone is concerned about what they are saying online about their personal lives, etc., keep in mind everywhere you post. FB is actually more secure if you have your settings locked down than a lot of sites.

I use my FB page as a way to advocate for Epilepsy, I don't mind talking about it. Several of my co workers know about it and actually donate to my fundraisers and support me!

I was diagnose 3 years ago and I'm still working for the same ppl. I have an album up of what I've gone thru during stages of eeg's and phases in my life. I asked my job every year to donate towards the walk for me and support me in anything I do towards Epilepsy. Ppl are scared of what they dont know or understand.

If your afraid to talk to about it then your ashamed of it. IMO. Your story will help someone else. Go on fb and find an Epilepsy group or 3 and join them. Talk. Share. Laugh. Cry.

Talk about it on YOUR timeline!!!!!!!! Who the heck cares what others think. Yes your employers need to know so that they can makes the necessary precautions. But I would call around to some different HR dept's and find out how they go about that process before you get your hopes down about the job situation.

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