I Am Embarrassed to Have Seizures


I have never really talked about this much before on my blog. I have talked about stigma, which is the major root of this feeling, but not this feeling alone. Now I am going to look at this underbelly of my feelings, and look under the corpse of the whale and really look at what it is that I have avoided for so long.

I am embarrassed of having seizures. I am embarrassed of when I have seizures in public. I can tell when people revert their eyes, or when I have to leave the room to get some air or when thereโ€™s too much stimulation. I am embarrassed. Let me examine the word embarrassment. I would say that at the root of embarrassment is some sort of shame. It feels shameful to lose control of my body. It feels gross to involuntarily drool or make snorting sounds. I have bumps and bruises all over me from falling off chairs and flipping off beds. I try to make the most of the cards I was dealt in life, and so I do, but seizures make it difficult to do certain things. The other day I was at an event and due to the nature of the event I was attacked (I wasn’t actually ‘attacked’ but it makes it sound more dramatic) by a mob of flash photographers. It was a major trigger for a seizure and I couldn’t be part of the photo. Thankfully I had some ativan on me, but I had to be careful the rest of the night, and I felt groggy and needed my caffeine to keep the night going. (Even though I have sworn off mostly all caffeinated drinks). I made the best of the night and absolutely refused to let the seizures get me down, and thank god very few people noticed, but it has taken the wind out of my sails and I am resting for the next day in order to regain my stamina for the next day.

My seizures sometimes have warnings and I can sit down quickly and in a safe spot, and sometimes I have no warning at all. Sometimes I have no choice but to just sit down and seize and move around uncomfortably with curious onlookers. I fucking hate it! I wish that part of my brain would stop! I am the type of person who smiles all the time and who will tell you that things are always going well. It is hard to talk about this kind of stuff, and it causes pain and anxiety.

Everyone cares about me, and I SO appreciate that. Where would I be in this world without them? Sometimes though I just wish I could shrink into my seat and not receive the type of attention that I do. I am grateful for the people that care for me, I just wish they didn’t have a reason to be caring. You know what I mean? I love them all and I am so glad to have them in my life. Anyway, this is the end of my rant. This is the most true and raw I have been in awhile. I hope you see it. Love you all! xox

19 thoughts on “I Am Embarrassed to Have Seizures

  1. Wow, thank you for sharing. It was great to hear of another who strongly holds on to her smiles, one of the reasons why people care for us. One thing I found hard to accept is that the care I receive is not because I have seizures but because people admire how I deal with it. I believe that would be for you as well. Keep going, you are great =)

  2. I worry that I am embarrassing other people!? I have become a bit of a hermit lately, perhaps i should follow your example and just carry on regardless. ๐Ÿ™‚

    1. Oh, I don’t worry about embarrassing other people…I just feel embarrassed myself. Aw thanks. Carrying on regardless is the best and only thing you can do. ๐Ÿ™‚

      1. You are welcome! I am excited that this post has resonated with so many! It just shows that we have a strong community! Also, no worries about the typos, I make them all the time. ๐Ÿ˜‰

        Have a good one!

  3. I went searching for anything related to the way I feel about it myself. Honestly, I didn’t expect to find anything. I’m glad I found your post. Sometimes I can’t help but to feel like a freak. I feel bad that sometimes I do need help, or I might choke on my blood and drool, and wonder if others watching this truly understand. I’m happy it doesn’t happen often, however, I work a full time job out in public. It is still really embarrassing and hard for me to explain all of this to new co-workers and supervisors. Even though it might never happen in front of them, unfortunately it is likely, and even though it’s hard, I feel I owe it to them to give them heads up. Reactions are different. Some are familiar with it, and say not to be ashamed. I found alot of people still have no idea, and even though I could tell them I will be okay, I know they would flat out panic if it ever happened in front of them. That’s what makes it worse. Hope that maybe if you and I can communicate about it, we might feel more comfortable in letting those around us be more aware and know more about it, and maybe we can help reduce these stigmas, and feel better about just being in public. What do you say? Will you get back to me?

    1. Hey Becka,
      First of all thank *YOU* so much for writing so candidly and sharing your experiences with me. You’re not in this boat alone so I totally understand your experience! We can definitely chat further about this- feel free to add me on Facebook or you give me your email address I’ll send you an email! (I don’t really use the lifeatfullvolume@gmail email, but I have another gmail account. Let me know what you think! I think having a support system as well as creating advocacy is crucial, so I’m totally on board!

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