Having epilepsy is not easy, but I have learned that I have to be brave when talking about it, I have to bring it up and I have to tell people. I bring it up and I’m not afraid to because that’s just a part of my new normal, living with epilepsy. I know people don’t know that much about it because I didn’t know that much about it five years ago, when this adventure began. I would rather be open and honest about it than hiding it or having secrets.

Saying that I am open to talking about it doesn’t mean that all I do is talk about epilepsy. I am open to the subject because I don’t want people to be scared by it; I just want to be open about it to get the subject out of the way. I’m more than that, I am open about it in job applications and interviews.

I still think that’s one reason I don’t get called back for jobs but I also feel bad about thinking that because I don’t like to think people would do that and if it is, those weren’t the right jobs for me. But I still think it’s better to be open about talking about it, I’m not scared to say it, it’s there and hiding it won’t get rid of it.

What has worked best for me, besides taking the medicine twice a day every day, is being honest about it, sometimes joking about it. This makes people feel more comfortable talking about it and that just helps living with it.

Dealing with stigma

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7 thoughts on “Start the conversation

  1. Maria, the downsides of my situation are not being in a place with ideal public transport or somewhere in walking distance to a job. Aside from taking your regular medication, what else has helped you with your Epilepsy?

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    1. I’m not really walking distance to a job either but I have been able to find people to drive me everywhere. Since my neurologist gave me the ok to drive I have been trying to learn how to drive again but I have to find a driving instructor because I don’t trust myself behind the wheel yet.

      Aside from taking my medication I have been following all my neurologists instructions, like sleeping 8 hours every night andI have to say that’s my favorite part of epilepsy, I can say I have to sleep and no one can argue with that. Also going to every appointment. Apart from that one thing that has also helped me is, I know it sounds corny but it’s true, not letting epilepsy define me. I know I have it and I’m honest about it, I don’t hide it from anyone but I just live my life with it. There are things I can’t do anymore so I just don’t do them and do something else.

      After five years it really doesn’t bother me anymore, especially since everyone around me has responded well to my epilepsy. I know I can’t drink so I don’t, I know I can’t stay up all night so I don’t and I know I can’t miss talking my medicine so I don’t.

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      1. Maria, another thing that I find perplexing is why some Medical Doctors seem to frown on natural treatments for Epilepsy in some cases, such as use of herbs. Doctors do the best they can, however, Western medicine is short-sighted in some regards. If a Doctor gave their blessing, however, advised caution, I would not see anything wrong with that. What are your thoughts in that regard?

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        1. I have to be honest, I really haven’t heard much about medical herbs for epilepsy. My doctor never said anything about that but he did find the medicine that would control my epilepsy. I think the only use that as a last resort for patients they can’t find anything to control it.
          I know of one patient of my doctor’s partner who they just started on medical marijuana now because they couldn’t find anything to control it. Last time I asked I seemed to have decreased the amount of seizures he has everyday.
          I think maybe it shouldn’t be the last resort because of the cost to patients an all the negative side effects some of those medicines have.

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