How do we know if someone has an invisible disability so that we can show support and compassion? We don’t. I recently was led to a little comedy routine on my FB and thought I’d check it out. But instead of making me laugh, I felt sad. It keeps popping into my head over the last few days and feeling ashamed. The comedian talks about seeing a man come into the bar. She emphasizes his appearance and behavior to show us that she doesn’t perceive anything wrong with him. She judges him a little bit for having a phone holder on his waist but, other than that, he looks like a normal working man. He orders a drink and the bartender asks “would you like a lemon or a lime with that?” He seems uncertain but also maybe under stress from the question. She asks a couple more times with him showing that he is stressed and uncertain until he points and says “the green one”. The bartender says “that’s a lime sir” and he says “I know”. The comedian acts horrified that there are people out there that are this stupid and she wants a number to call like you would if you think you saw a terrorist, so that she can report them and get them off the streets. People like this shouldn’t be living or reproducing. I assume she’s technically exaggerating for the sake of comedy but…….. like I recently discovered on my great-grandparents’ marriage certificate (was probably there on my grandparents too), “imbeciles” and “epileptics” were specifically prohibited from getting married. I would assume that the intention was to stop them from having children.
So, this IS actually a real thing. Luckily these restrictions have been taken away but it’s not very funny when you hear someone saying something like this and everyone laughing at it. After a seizure it takes me quite awhile to get my speech together. Many times, I can’t think of the word I’m looking for. I know what I’m talking about and I appear like a “normal” person on the outside but my brain has experienced significant trauma. If you give me time, I will be able to remember the word but usually I just try to describe it to my kids and husband. “You know, the thing you drive around….to do work…” “A car?” “No….like, on a farm….” “Oh, a tractor?” “Yeah!” They don’t laugh or shame me. But it does feel hard to leave the house. What if this happens outside the home? What will people think of me? What if they laugh at me? You might think “so what, no big deal….don’t worry about what other people think!” or “it’s just a joke!” But, for me, it ties to my disability. And it’s caused me a lot of pain. I struggle to get words out so I struggle to have the confidence to talk. I remember a yoga teacher telling me once “you really need to get more confidence”. Do they sell that at some store?! Because I have a feeling that if that person had lived in my shoes, they might find themselves struggling with confidence. I have all kinds of reminders and timers on my phone to tell me when it’s time to do basic tasks. I do live more in the present moment. But it’s hard to live that way. When I try to get help finding the word that I want from the people around me, it really hurts to think that they might not have compassion….they might be wanting me to get out of society completely. They might be thinking what I need to do better so I’m not in this position. How many times has discussion about my epilepsy led right to advice? I always try to respond with interest because I know that these people are well-meaning. But I feel like they, again, instead of listening to the experience that I’ve gone through for years and years….they are assuming that there’s something they know about that I don’t and like I could just make my situation better. In other words, it’s like it’s my fault. I mean….they don’t have seizures, right? They must have done something right that I didn’t do.
That may seem like a pretty inappropriate conclusion to draw from someone who’s just sharing something that they heard…..but these are people who don’t know anything specific about epilepsy at all. They’ve “heard” something. Please don’t assume that I want to hear advice. Please, at least try to listen more. I’ve lived with epilepsy as long as I can remember. It affects every aspect of my life. My life would be completely different without it. I didn’t choose it and I can’t make it go away. But, also, recognize that you might not see it. You might not recognize when someone’s just had a seizure or has some other brain injury. These people, struggling for words, might have other wonderful things to offer the world. One of my family members that was not very close to me said, as I was describing the last medication that I got off of because of side effects, “well, you’re just going to have to learn to get over those”. They didn’t know what the side effects even were!!! That was years ago and it still stings when I remember it. I know people think like this even when they don’t say it. The family member said it and then walked away and my feelings of shame were triggered. I was feeling like I know that I shouldn’t have this disability and there was some easy way to manage……I clearly do not want to do that which is why it continues. Some kind of insanity perhaps. This family member understood better than me (and, come to think of it, they must understand better than the neurologist!)
Another great thing to remember is that treatment is personal. We should feel compassion for people with disabilities. Another family member, when I was getting off one medication told me, “well, there are many more that you should be trying”. This is shaming of the victim of a disability. You don’t know what I need to do for my epilepsy. If you do not want to give specific help and/or support, that I need, please at least stay out of it. I know that’s hard to do!!! It feels uncomfortable to see someone suffering and not be able to do anything….but don’t turn those feelings onto the person who is already suffering.
Showing compassion for invisible disability
How do we know if someone has an invisible disability so that we can show support and compassion? We don’t. I recently was led to a little comedy routine on my FB and thought I’d check it out. But instead of making me laugh, I felt sad. It keeps popping into my head over the last few days and feeling ashamed. The comedian talks about seeing a man come into the bar. She emphasizes his appearance and behavior to show us that she doesn’t perceive anything wrong with him. She judges him a little bit for having a phone holder on his waist but, other than that, he looks like a normal working man. He orders a drink and the bartender asks “would you like a lemon or a lime with that?” He seems uncertain but also maybe under stress from the question. She asks a couple more times with him showing that he is stressed and uncertain until he points and says “the green one”. The bartender says “that’s a lime sir” and he says “I know”. The comedian acts horrified that there are people out there that are this stupid and she wants a number to call like you would if you think you saw a terrorist, so that she can report them and get them off the streets. People like this shouldn’t be living or reproducing. I assume she’s technically exaggerating for the sake of comedy but…….. like I recently discovered on my great-grandparents’ marriage certificate (was probably there on my grandparents too), “imbeciles” and “epileptics” were specifically prohibited from getting married. I would assume that the intention was to stop them from having children.
So, this IS actually a real thing. Luckily these restrictions have been taken away but it’s not very funny when you hear someone saying something like this and everyone laughing at it. After a seizure it takes me quite awhile to get my speech together. Many times, I can’t think of the word I’m looking for. I know what I’m talking about and I appear like a “normal” person on the outside but my brain has experienced significant trauma. If you give me time, I will be able to remember the word but usually I just try to describe it to my kids and husband. “You know, the thing you drive around….to do work…” “A car?” “No….like, on a farm….” “Oh, a tractor?” “Yeah!” They don’t laugh or shame me. But it does feel hard to leave the house. What if this happens outside the home? What will people think of me? What if they laugh at me? You might think “so what, no big deal….don’t worry about what other people think!” or “it’s just a joke!” But, for me, it ties to my disability. And it’s caused me a lot of pain. I struggle to get words out so I struggle to have the confidence to talk. I remember a yoga teacher telling me once “you really need to get more confidence”. Do they sell that at some store?! Because I have a feeling that if that person had lived in my shoes, they might find themselves struggling with confidence. I have all kinds of reminders and timers on my phone to tell me when it’s time to do basic tasks. I do live more in the present moment. But it’s hard to live that way. When I try to get help finding the word that I want from the people around me, it really hurts to think that they might not have compassion….they might be wanting me to get out of society completely. They might be thinking what I need to do better so I’m not in this position. How many times has discussion about my epilepsy led right to advice? I always try to respond with interest because I know that these people are well-meaning. But I feel like they, again, instead of listening to the experience that I’ve gone through for years and years….they are assuming that there’s something they know about that I don’t and like I could just make my situation better. In other words, it’s like it’s my fault. I mean….they don’t have seizures, right? They must have done something right that I didn’t do.
That may seem like a pretty inappropriate conclusion to draw from someone who’s just sharing something that they heard…..but these are people who don’t know anything specific about epilepsy at all. They’ve “heard” something. Please don’t assume that I want to hear advice. Please, at least try to listen more. I’ve lived with epilepsy as long as I can remember. It affects every aspect of my life. My life would be completely different without it. I didn’t choose it and I can’t make it go away. But, also, recognize that you might not see it. You might not recognize when someone’s just had a seizure or has some other brain injury. These people, struggling for words, might have other wonderful things to offer the world. One of my family members that was not very close to me said, as I was describing the last medication that I got off of because of side effects, “well, you’re just going to have to learn to get over those”. They didn’t know what the side effects even were!!! That was years ago and it still stings when I remember it. I know people think like this even when they don’t say it. The family member said it and then walked away and my feelings of shame were triggered. I was feeling like I know that I shouldn’t have this disability and there was some easy way to manage……I clearly do not want to do that which is why it continues. Some kind of insanity perhaps. This family member understood better than me (and, come to think of it, they must understand better than the neurologist!)
Another great thing to remember is that treatment is personal. We should feel compassion for people with disabilities. Another family member, when I was getting off one medication told me, “well, there are many more that you should be trying”. This is shaming of the victim of a disability. You don’t know what I need to do for my epilepsy. If you do not want to give specific help and/or support, that I need, please at least stay out of it. I know that’s hard to do!!! It feels uncomfortable to see someone suffering and not be able to do anything….but don’t turn those feelings onto the person who is already suffering.
5 years ago Uncategorized