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I Think I Need Some Emotional Support

Mon, 02/24/2020 - 12:15
Hi, I'm Shira. I apologize for any spelling mistakes, I am not from an English speaking country. I am almost 29, and have had absence seizures for as long as I can remember myself. They weren't diagnosed because they were pretty rare (happened once every few months), and never happened while I was speaking with an adult. I remember myself as a teenager asking some friends if they had ever experience themselves disconnecting from their body and seeing the world around them in slow motion (expecting them to say yes), they all said no. It never really bothered me. When I was 20, my mother's friend from high-school came to meet us and said she had become a psychic. I explained this strange feeling I always had, and she told me I have psychic powers and need to meditate. This became a family joke, until 4 years later, when I had an absence seizure while I was talking to my mom and brother. They were really freaked out, and my mother immediately understood this is a type of seizure. A few months later a had a tonic- clonic seizure in my sleep, and that's when I was first diagnosed with epilepsy. I was 24, and it was very hard for me to go from being a "healthy person" to needing to be on medication twice a day. Yesterday we had guests over, and I hadn't taken my medication. I had an absence seizure at the table (for like 15 seconds), and they were really freaked out. My husband explained everything's ok and it's a medical condition that will pass quickly, but I can't get over feeling humiliated, weak and exposed. I know this is stupid. My husband's amazing and keeps telling me that there's nothing to be ashamed of, and it doesn't influence anyone's opinion of me. He also keeps reminding me that of all health conditions I could have, we are very lucky that this is it. But I feel like I need support from people who can understand how I feel. The thought that I have no control over my body and freak people out is very hard for me.


Hi Shira, I know exactly what

Submitted by cuirizslug on Mon, 2020-02-24 - 23:27
Hi Shira, I know exactly what you feel like. I’m 26 years old and was diagnosed with epilepsy at age 12 I believe. Cannot really remember. I’ve had multiple grand-maul seizures in class and at work. Every time I never wanted to go back the next day because I was embarrassed. Over these passes 5 years or so though during my time in college baseball I have become much more mentally stronger. I’ve read many mental books and coke to realize that you can only control what you can control. These seizures that we have are something we cannot control. How people see us are also something that we cannot control although I’m sure their opinion has not changed. All we can do is continue to keep on living our lives the best we can with the our loved ones.You speak great English by the way!Brian

Hi,Thank you for posting and

Submitted by Anonymous on Tue, 2020-02-25 - 09:54
Hi,Thank you for posting and we understand your concerns. Brian has shared some wonderful advice regarding his experience managing how epilepsy affects his life. Being diagnosed with epilepsy can be upsetting and make you feel isolated and alone.However, it’s important to remember that you are not alone, and we are here to help support you. We understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. t’s not uncommon for individuals who have just had a seizure to experience feelings of embarrassment and frustration, but we are glad to hear that it sounds like you have a very supportive husband and family to help you manage these feelings. It’s important that you’re reviewing your concerns and frustrations with your healthcare team and if you experience any changes in seizure types, frequency, moods, behaviors, symptoms and side effects, to help determine what individual treatment plan is best for you. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support options here:, you may always to contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, or [email protected].


Submitted by flookfik on Fri, 2020-02-28 - 22:39

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