Do Not Talk About It - They Said

In all fairness, not a lot was known or talked about when I was diagnosed with Epilepsy 45 years ago. But, I wonder how much of this has changed? Can you relate to the following?

“Do not talk about it!” they said.  A variety of people told me this over the years.

“Oh, thank goodness you are getting married. Now there is someone to look after you!” This was said from a loving place. 

“You are financially set for life, so do not worry about money!” No. That did not happen, nor did I expect it. 

“Do not tell people you have epilepsy; it scares them.” 

“What, you lost your job because you have epilepsy and could not come to work?” 

“Do not tell the employer you have epilepsy; they will not hire you!”

“Nice girl, but she has epilepsy.” 

“Epilepsy is satanic, you know.”

“You may not make it to 65 years old.”

Wow! 

This just made me stronger! The things people said to me left me with NO words at certain points in my life.

Do I have scares from seizures? You bet! Emotionally and physically.

Is there damage to my face and head? Yes. Are there noticeable signs on my face? Yes; you have to look hard to see it, but that makes me ME! 

Were the financial costs huge?! YES, . . .  some were covered. Out of pocket costs were extraordinary as  I searched for answers, alternative solutions, and help to fix the huge impact on my body and health. Above 6 figures. 

At some points, I could not work or drive. I had to take time off work. By the way, some employers were incredibly understanding and patient with me. Hudson’s Bay Company was one. They were so good to me!

Mental health was a struggle: depression, anxiety, and panic attacks…  I think I did well at hiding it all.  

Losing pregnancies hurt, too. Very few knew to what extent. “Keep things quiet,” right? I became brilliant at blocking emotions for the most part. There is always the exception, though.

When relationships ended, I was never shocked, but I will tell you, some really hurt. Did I sabotage them because I was damaged goods? Definitely. Did I really do that? Shame on me!

I am blessed that it is dormant, in remission, or hiding; that is for sure! Will it come back? Not if I can help it! 

Are there a lot of positives in this journey? You bet! I am feeling very blessed, grateful, and thankful for them.

We all have a story, right? 
AND
they are all important! 

I am a woman who lives without fear of epilepsy, or, I try! LET'S TALK ABOUT IT!

Liz Nicholls​