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Doubting and Mistreatment
Fri, 06/21/2013 - 14:17Comments
Re: Doubting and Mistreatment
Submitted by rosanna1980 on Fri, 2013-06-21 - 19:11
Re: Doubting and Mistreatment
Submitted by Princess Epileptica on Mon, 2013-06-24 - 10:05
Hi, Rosann
I find myself in the same situation you are in. I have TLE, so my seizures aren't apparent to anyone but me. Everyone is supportive and wonderful except my husband. He tells me that my seizures are "all in my mind" and that I should not increase my meds as my neuro tells me. I am pregnant and I know he's worried about the baby and, in addition, his little sister died of status epilepticus in his arms, so there is some denial as well. I just wish he could be more understanding, or at least pretend to be. A few weeks ago, I told him that I felt a seizure coming on. I thought this would help us since I'm not very nice when I'm having a seizure. I thought it would help him understand that my behavior was electrical and nothing personal. He got so mad at me and told me that the only reason I thought I was having seizures was that I had the diagnosis of TLE. He wouldn't talk to me for three days, and this was my post-ictal period where I had a splitting headache and really needed some snuggles. I've learned to keep everything to myself, or at least share only with my mom. I can't tell him how my meds are working or if I'm having a problem or anything.
From my experience with doctors, I find that a female doctor is more likely to treat a patient respectfully. Unfortunately, I've developed some sexism toward doctors because I've had repeated bad experiences. The male doctors I've had simply don't listen and they know everything and treat me as if I were the queen moron of the world. I don't know if this fits your experience or not. I have the most wonderful neuro (woman) and she takes every word I say seriously.
I'm sorry to say that I don't have any tips for you on how to deal with this problem. I just wanted to tell you that you're not alone in having this experience. I don't know if it gets better as I'm still new at this. If it helps, I certainly believe you and I know how you feel. Hugs.
Hi, Rosann
I find myself in the same situation you are in. I have TLE, so my seizures aren't apparent to anyone but me. Everyone is supportive and wonderful except my husband. He tells me that my seizures are "all in my mind" and that I should not increase my meds as my neuro tells me. I am pregnant and I know he's worried about the baby and, in addition, his little sister died of status epilepticus in his arms, so there is some denial as well. I just wish he could be more understanding, or at least pretend to be. A few weeks ago, I told him that I felt a seizure coming on. I thought this would help us since I'm not very nice when I'm having a seizure. I thought it would help him understand that my behavior was electrical and nothing personal. He got so mad at me and told me that the only reason I thought I was having seizures was that I had the diagnosis of TLE. He wouldn't talk to me for three days, and this was my post-ictal period where I had a splitting headache and really needed some snuggles. I've learned to keep everything to myself, or at least share only with my mom. I can't tell him how my meds are working or if I'm having a problem or anything.
From my experience with doctors, I find that a female doctor is more likely to treat a patient respectfully. Unfortunately, I've developed some sexism toward doctors because I've had repeated bad experiences. The male doctors I've had simply don't listen and they know everything and treat me as if I were the queen moron of the world. I don't know if this fits your experience or not. I have the most wonderful neuro (woman) and she takes every word I say seriously.
I'm sorry to say that I don't have any tips for you on how to deal with this problem. I just wanted to tell you that you're not alone in having this experience. I don't know if it gets better as I'm still new at this. If it helps, I certainly believe you and I know how you feel. Hugs.
Re: Doubting and Mistreatment
Submitted by vivaciousgemini22 on Fri, 2013-06-21 - 18:46
I have had that same experience. My friend did not believe me when I told him that I had a seizure at his concert and he asked me, "Why was I "ankling" to get out of here?" My seizures are provoked by loud noises and he did not understand it. He brushed me off and I did not like that at all. It made me feel like he wasn't listening to me and I felt like I couldn't talk to him about my Epilepsy. But you know what I have learned how to do is to ignore people that act that type of way. They are not worth worrying and stressing and screaming. That would bring on more and more seizures. I truly think that it is ignorance on their part and not taking the time out to understand what you are going through.
I have focal seizures. So my seizures go away really quickly. At times, the aftermath of my seizure is good and at times it can be REALLY BAD. I mean REALLY BAD. I tend to get sick to my stomach, the room be spinning around, and my body be badly overheating. It would be SOOO UNREAL!!!!
You know what... you are uniquely beautiful. That's good enough. You know that something isn't right with you and it is their choice not to listen. Don't waste your breath trying to explain your Epilepsy. Hopefully, they will eventually come around and give you the support that you need. Stay true to you. You know what's up. :)
I have had that same experience. My friend did not believe me when I told him that I had a seizure at his concert and he asked me, "Why was I "ankling" to get out of here?" My seizures are provoked by loud noises and he did not understand it. He brushed me off and I did not like that at all. It made me feel like he wasn't listening to me and I felt like I couldn't talk to him about my Epilepsy. But you know what I have learned how to do is to ignore people that act that type of way. They are not worth worrying and stressing and screaming. That would bring on more and more seizures. I truly think that it is ignorance on their part and not taking the time out to understand what you are going through.
I have focal seizures. So my seizures go away really quickly. At times, the aftermath of my seizure is good and at times it can be REALLY BAD. I mean REALLY BAD. I tend to get sick to my stomach, the room be spinning around, and my body be badly overheating. It would be SOOO UNREAL!!!!
You know what... you are uniquely beautiful. That's good enough. You know that something isn't right with you and it is their choice not to listen. Don't waste your breath trying to explain your Epilepsy. Hopefully, they will eventually come around and give you the support that you need. Stay true to you. You know what's up. :)