A question for the LGS (Epilepsy) Community

Thinking about how other people talk about your or your loved one’s condition, what are some words or perceptions that make you cringe? What do you wish people wouldn’t say?

Answers from the Community

Some people think of my daughter as lazy, unwilling to do anything, and that she could do better. She doesn’t have to sit around and allow herself to be nothing.

Well, I despise the word retarded. I hate when people ask what’s wrong with her. I don’t like staring. I would rather somebody ask me how she is, what’s going on. I don’t want people to assume that she is not smart just because she can not communicate.

I’m tired of hearing people say, “Oh, I feel so bad for you. You have it so hard.” And just things like that.

I think one of the biggest things is that even though he’s six, people still call him baby. It really frustrates myself and his sisters. One of his classmates got really upset about it as well and suddenly said, “He is not a baby. He is the same age as me. He’s just present, or he just looks different and doesn’t act the same.” So I hate that. And then also, it’s really frustrating when people ignore him like he doesn’t exist. People will say hi to our other children who are neurotypical but won’t talk or interact with our little guy.

I feel that this was more of an issue for me at the beginning. Now the people that surround us don’t really give us this unsolicited advice. The people that we surround ourselves with now are just our friends. They’re just with us, but we have gotten suggestions on what we should do and medications that we should try. And this is from people who do not have a background in medicine or do not have the familiarity of having someone with epilepsy. It was just people trying to give us their two cents. From even an old acquaintance, trying to sell us herbal products to help her. But really it was just to make a sale. And so those types of things would make me cringe. Like I said, aside from that, we don’t have a lot of that anymore. And that was the main one that, that would bother me. Currently, my daughter has epilepsy and so she tends to seize at night. And because of SUDEP one of us is always sleeping with her so we can watch her, we can hear her, we have monitors on her that sense motion. We have a service dog that can alert us. So we try everything to keep her safe. And a friend of mine once said, “What if you don’t hear her seizing at night. Then what?” And I thought that was kind of cruel. My response was just, it’s crazy, but I do hear her every single time. And I did. The smallest little noise I just knew when she was seizing, she would make a specific noise with her mouth, like a smacking noise, and I would instantly wake up. And so I thought that was kind of cruel because I get where she’s coming from, but I don’t want to think that way. And so that was one of the ones that was just not kind if you will.

I think my biggest pet peeve is when people ask us, “What’s wrong with her?”, and they do it in front of her. Adults will say that. It just drives me crazy, because you wouldn’t walk up to somebody who was missing a limb or something and say, “What’s wrong with you?”, because there’s nothing wrong with her. My response has become, “There’s nothing wrong with her. Are you asking why she’s in a wheelchair?” But that definitely makes me cringe.

One of the things that’s difficult is because the seizures have caused a developmental delay, especially with his ability to speak, sometimes people talk to my son … either talk about him like he’s not there when he is present or talk to him in what I would call baby talk, which is very frustrating because he’s 16 years old. He understands most of what you say, he just can’t verbally respond. I think that at times that can be condescending. So that’s something that always bothers me. The other perception that is frustrating is that people don’t realize that some forms of epilepsy are intractable. So if they know somebody who takes medication and it controls their epilepsy, there’s also the perception that if your child is still having seizures that you’re not doing enough to control them, or you’re just not following the medical regimen close enough. So that’s very frustrating. There almost seems to be like a blame game instead of a compassionate type of attitude towards the person with epilepsy.

They say that it’s scary and strangers don’t know what to do. Which is understandable, but they just hate watching me have them. And it’s awkward and just, they never really want to watch me go through it.

I don’t know. I can’t think of any offhand other than just the fact that people in general really don’t think of people with disabilities when they should because if they don’t have a disability, they just don’t think of things. And the fact that ableism exists is a really big thing as well because people think, “Oh, these people don’t need accommodations,” but if you’re disabled, you do need the accommodations to live a normal life. I can’t think of any specific names or things like that with epilepsy that I’ve heard that make me cringe, but basically, just ableism as a whole is a huge problem. And as a disabled person, that’s a big one.

On one assumption is the type of seizures that I currently have. The assumption is that I have grand mal, and they ask questions that make me uncomfortable. Or they say things like, “Oh, well, you don’t look like you would have them,” which doesn’t make sense because you really can’t usually tell if someone has them until they do. So that’s about it.

The biggest misconception that makes me really cringe is when people automatically assume that I can’t go to concerts, or I can’t go on roller coasters, or I can’t be anywhere with strobe lights. I think there’s this really big misperception that every single person that has epilepsy is photosensitive. And that’s just not the case. And while that’s not necessarily a bad thing or a negative stigma, it does make me cringe because I’m automatically perceived as someone who has to abstain from very normal activities and I don’t have to. And so that’s something that I really have to take my time explaining a lot is that I’m not photosensitive. And sometimes even after explaining that to people, they are still very wary of strobe lights around me, which makes me feel of course very abnormal. And the only other big one that I can think of that’s really affected me is when people automatically assume that having epilepsy means that you have grand mal seizures and convulsions. When, of course, those aren’t the only types of seizures. And so I wish that there was more knowledge that there are many different types of seizures and grand mal seizures are not the only kinds of seizures.

People always feel very sorry for us, and I think that’s okay. I think we wish it was more… I wish people felt sorry in a more accepting way, but I understand that it’s a difficult condition to live with. And I understand that people can’t feel empathy unless they’ve actually lived this, so I’m okay with that.

When I think about people talking about epilepsy, I think we still get some of the old Victorian attitudes that I think of that it’s unclean, and it’s something wrong with you physically. It makes you mentally ill is something that I’ve gotten before, and I wish people wouldn’t say that. I feel like we’re stuck with a lot of the old stigma and a lot of people still believe a lot of the perceptions and myths like you should put a spoon in someone’s mouth or that people with epilepsy need to be treated like they’re like fragile, breakable dolls or something. I think the perception that people with epilepsy are useless is the thing that I most want to change and that I most want to deal with. I tend not to keep people in my life that have that reaction because, to me, the sky’s the limit no matter the disability. I feel like there’s a way for people to get there if they really are willing to put their mind to it.

Some things that I wish people would not say. Words that make me cringe are: “Well, that girl just has epilepsy” … “She’s not going to succeed.” Things like that. Just saying that epilepsy controls her life or his life, those kinds of things are things that make me cringe. Ways to show that they do care are maybe showing that, yeah, she might have epilepsy, but she’s making her life hers, the way that she wants to make her life.

Oh, it’s not even what people say to me. It’s the way that people look at my kid. I hear people call them weird all the time, or I hear a lot of kids call [PII redacted] weird or that little, that boy is being a baby or any kind of derogatory, just mean thing like that, it upsets me. But it’s the looks that bother me more than anything. Seeing people look at my kid like he’s defective or broken. And that bothers me more than anything is that they have no idea how much work it has taken for him to even get to where he’s at now. There was a time when [PII redacted] couldn’t even use the right side of his body and it was contorted. I thought he was never going to be able to walk. And now he’s running and playing and laughing, like literally the happiest, goofiest kid I’ve ever met in my life. And people just take for granted how much it takes to get to that point. And they don’t realize how quickly that can be taken away from us. Those of us in the LGS community, our kid is… It fluctuates like my son can be happy go lucky, running and playing one day. And then if he has seizures like he’s gone and he’s not there anymore. And that, to me, bothers me more than anything with those looks. I think now that I’m thinking about this, the other thing that really bothers me is when people tell me how much of a blessing it is and how I must be such a strong person and such a strong mother to the blessed with a child like this and that he must be a special child of God, to be this way. And that’s just bullshit. My kid is special, but there’s lots of kids in this world who aren’t blessed with parents that work their butts off to make sure that they have a good quality of life. And this is a hard life and my kid is amazing and he’s taught me a lot of things, but it’s so disrespectful to hear that from people. And I wish that people would maybe think about that before they say things like that.

People have been really insensitive at times when [PII redacted] has had seizures in public places and been incontinent, so there’s a big mess and, and that frustrates me. And also when we are late to things because he’s had a seizure or we have to cancel because he’s ill at home, and people are rude and I just think they don’t even understand the shoes we’re walking in. So that frustrates me. The other thing that is also cringe-worthy is when people think that we’re so amazing and incredible because we’re doing all this stuff and they don’t think they could. That doesn’t help me either. What does help me is when friends sit down and let me just vent my frustrations or feelings so that I can just move on.