For parents with college-bound children.

Matthew74

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This may be useful to parents sending their kids to college. It's a letter I wrote to a college based on my experience, and what I have heard from others.

To Student Welfare:

I am not writing so much on my own behalf as for other students who have epilepsy. I’m sure that you have dealt with many students with epilepsy before. Each person is of course different, as is the particular features of their epilepsy. In spite of intractable, but not debilitating epilepsy, I have attended university for 9 years and have both a bachelor’s and master’s degree. My experience, and the general ignorance of the condition (which I shared as an undergraduate), is the basis for my presumption.

The hardest thing anyone with epilepsy faces is isolation. You have your seizures alone. It doesn’t matter how many people are in the room. You can’t explain, and may not even know, what your seizures are like. In everyday life it is invisible, so people assume nothing is wrong with you and judge you for a personal failing when it begins to affect you. For example, they don’t understand why you are tired or can’t remember things. You are afraid to tell people because they often react poorly, and even if you did tell them, they still wouldn’t know what epilepsy is, or what it is like to have it.

Most kids when they go off to college are clueless about pretty much everything. That’s why they get drunk, do drugs, and stay up all night. The average student with epilepsy is not that different, and unlike most students, not knowing how to conduct themselves can have a disastrous effect on their health. As a freshman and sophomore I could barely figure out how to feed myself, let alone keep the sort of healthy living habits I needed to. I didn’t even know that lack of sleep was one of the biggest seizure triggers there is. For myself, and probably many students with epilepsy, typical dorm life is a disaster waiting to happen.

Nobody knows anything about epilepsy, including people with epilepsy. When I asked on an epilepsy forum, “What should I say in a presentation about epilepsy?” I did not get responses about the struggles of living with epilepsy. The first thing they wanted me to communicate is that there are different types of seizures. I won’t enumerate them here, I will only say that their descriptions are often oversimplified, and most people with epilepsy seem to have more than one type. Epilepsy is a lot more than someone thrashing around on the floor. One of the things I personally find most difficult to deal with is that people don’t understand that it profoundly affects your life when you are not having a seizure.

Students with epilepsy routinely have to deal with the following issues. Poor memory. Sleepiness/exhaustion. Problems with (and consequences for) getting up early. Being unable to go to school the day after a seizure. Cognitive issues of various sorts. Poor social skills/social anxiety. Chronic depression or dysthemia. Inability to drive is also a major problem. Younger students also deal with caffeine, alcohol, and drug use, all of which cause seizures.

Regarding accommodations: When I first went to college in 1993, I don’t know if there was anything called “accommodations”. However, when I was in graduate school in 2010, I sought accommodations, and found the process humiliating and somewhat counterproductive. I’m not sure there is much standard accommodations can do for a student with epilepsy, unless they also have a genuine learning disability. The only thing that I used was extended time on assignments, and I could usually arrange this without formal accommodations. The problem isn’t that you can’t take notes, the problem is that going to school with epilepsy is a lot harder than going to school healthy. Not only is it harder, nobody understands or respects that it’s harder. With epilepsy you have to do the same thing as everyone else, only you feel bad, your brain isn’t working right, and you are taking pills that make you stupid. You can’t pace yourself because it’s more difficult, you have to work harder to achieve the same result. You have less energy, but it takes more energy. The more you push yourself, the worse your heath gets. You don’t get any appreciation for how hard you work, and you have to accept that. Most freshman will have no idea how hard they can, or more importantly can’t push themselves.

To really help someone with epilepsy I think you would have to do the following. They need to understand more about their illness. Online forums can help with this. They need to know what common seizure triggers are. I believe that it is necessary that priority be given to people with epilepsy in convenient accommodation. They need a comfortable living environment. That means less noise, more sleep, less distraction, less stress. They need easy access to school, work, and food. This is extremely important because they have less energy and can’t drive. I can’t tell you how much energy I’ve wasted, and hours lost, walking from place to place. Exercise is good, but you only have so much energy. If you have less energy to begin with, and it takes you longer to do your schoolwork, you don’t need the further challenge of it being harder to get around. Getting a ride is not an option. People don’t like to give rides. Priority should also be given for on-campus employment, because of the transportation issue. An on-campus job could provide them with hours of extra time, energy saved, and stress eliminated. Students with epilepsy need guidance on how to shop for and prepare food, simple suggestions like “eat vegetables”, “make rice”, and “you can’t live on pizza and ramen” (ramen has MSG, which is a seizure trigger). They need to know they can’t get drunk, can’t get high, and should avoid or eliminate caffeine. I would also suggest that they be offered and encouraged to go to regular counselling. Epilepsy and depression are concomitants, but even if they are not depressed, their illness combined with the stress of school means that they probably need somebody to talk to, and practical advice about how to handle school. If they do get depressed or ill, as they are more likely to do so than other students, it would be good for them to have someone they already know to go to. They should also be advised to take only as many classes as necessary, and when they can, only classes they are comfortable with. Decent housing and a little guidance would have saved me a lot of misery. At no point should they feel like they are being told they “need help”, but they often do, and it should be there for them.

Finally, I want to say that I have had a lot of negative experiences with telling people about my epilepsy. Most people are sympathetic. However, when someone finds out you have epilepsy, especially a professor or employer, you often loose their confidence, or fall in their estimation. The reality is when you disclose to someone you are putting yourself at risk. All other things being equal, a professor will put their energy into helping a healthy student, rather than one with a brain disorder. There is the temptation for an instructor to think that a simple mistake or inconsequential shortcoming is evidence of incompetence. I find it’s better to keep it to myself, even if I have an obvious failure. People usually forget about a mistake, they don’t forget about epilepsy. Everyone is different, and has to make their own decision about disclosure. You can advise students that if they disclose to someone, they should disclose only as much as absolutely necessary. Sometimes people with epilepsy feel like they have to spill the beans, but professors usually only want to know what is absolutely necessary. For example, if a student has a seizure and needs to stay home the next day, they can say they were “not feeling well”. That’s all the instructor needs, or cares to know.

Thank you,

Matthew
 

AlohaBird

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Very well written, Matthew.

My seizures started during senior year of my undergrad studies. I wish I had had the info I have on this forum now, back then.
 

Jumpwhat

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Having just graduated a year ago, I will say this is extremely well written. You really do cover a lot of important information for new college students. You also cover some of the social challenges too such as drinking and staying up all night, which I liked. I personally found people didn't understand why I couldn't stay up watching movies until 4AM or why I couldn't drink, even after I became of age. It is a unique situation to be in, especially during your first semester of college.

Have you considered preparing some form of a flyer or pamphlet to send to colleges? I'm sure many of the on campus health departments would jump on the information. Mine was clueless when it came to E. Just a though for you since you've already compiled a lot of information.
 

Jay1

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This may be useful to parents sending their kids to college. It's a letter I wrote to a college based on my experience, and what I have heard from others.

To Student Welfare:

I am not writing so much on my own behalf as for other students who have epilepsy. I’m sure that you have dealt with many students with epilepsy before. Each person is of course different, as is the particular features of their epilepsy. In spite of intractable, but not debilitating epilepsy, I have attended university for 9 years and have both a bachelor’s and master’s degree. My experience, and the general ignorance of the condition (which I shared as an undergraduate), is the basis for my presumption.

The hardest thing anyone with epilepsy faces is isolation. You have your seizures alone. It doesn’t matter how many people are in the room. You can’t explain, and may not even know, what your seizures are like. In everyday life it is invisible, so people assume nothing is wrong with you and judge you for a personal failing when it begins to affect you. For example, they don’t understand why you are tired or can’t remember things. You are afraid to tell people because they often react poorly, and even if you did tell them, they still wouldn’t know what epilepsy is, or what it is like to have it.

Most kids when they go off to college are clueless about pretty much everything. That’s why they get drunk, do drugs, and stay up all night. The average student with epilepsy is not that different, and unlike most students, not knowing how to conduct themselves can have a disastrous effect on their health. As a freshman and sophomore I could barely figure out how to feed myself, let alone keep the sort of healthy living habits I needed to. I didn’t even know that lack of sleep was one of the biggest seizure triggers there is. For myself, and probably many students with epilepsy, typical dorm life is a disaster waiting to happen.

Nobody knows anything about epilepsy, including people with epilepsy. When I asked on an epilepsy forum, “What should I say in a presentation about epilepsy?” I did not get responses about the struggles of living with epilepsy. The first thing they wanted me to communicate is that there are different types of seizures. I won’t enumerate them here, I will only say that their descriptions are often oversimplified, and most people with epilepsy seem to have more than one type. Epilepsy is a lot more than someone thrashing around on the floor. One of the things I personally find most difficult to deal with is that people don’t understand that it profoundly affects your life when you are not having a seizure.

Students with epilepsy routinely have to deal with the following issues. Poor memory. Sleepiness/exhaustion. Problems with (and consequences for) getting up early. Being unable to go to school the day after a seizure. Cognitive issues of various sorts. Poor social skills/social anxiety. Chronic depression or dysthemia. Inability to drive is also a major problem. Younger students also deal with caffeine, alcohol, and drug use, all of which cause seizures.

Regarding accommodations: When I first went to college in 1993, I don’t know if there was anything called “accommodations”. However, when I was in graduate school in 2010, I sought accommodations, and found the process humiliating and somewhat counterproductive. I’m not sure there is much standard accommodations can do for a student with epilepsy, unless they also have a genuine learning disability. The only thing that I used was extended time on assignments, and I could usually arrange this without formal accommodations. The problem isn’t that you can’t take notes, the problem is that going to school with epilepsy is a lot harder than going to school healthy. Not only is it harder, nobody understands or respects that it’s harder. With epilepsy you have to do the same thing as everyone else, only you feel bad, your brain isn’t working right, and you are taking pills that make you stupid. You can’t pace yourself because it’s more difficult, you have to work harder to achieve the same result. You have less energy, but it takes more energy. The more you push yourself, the worse your heath gets. You don’t get any appreciation for how hard you work, and you have to accept that. Most freshman will have no idea how hard they can, or more importantly can’t push themselves.

To really help someone with epilepsy I think you would have to do the following. They need to understand more about their illness. Online forums can help with this. They need to know what common seizure triggers are. I believe that it is necessary that priority be given to people with epilepsy in convenient accommodation. They need a comfortable living environment. That means less noise, more sleep, less distraction, less stress. They need easy access to school, work, and food. This is extremely important because they have less energy and can’t drive. I can’t tell you how much energy I’ve wasted, and hours lost, walking from place to place. Exercise is good, but you only have so much energy. If you have less energy to begin with, and it takes you longer to do your schoolwork, you don’t need the further challenge of it being harder to get around. Getting a ride is not an option. People don’t like to give rides. Priority should also be given for on-campus employment, because of the transportation issue. An on-campus job could provide them with hours of extra time, energy saved, and stress eliminated. Students with epilepsy need guidance on how to shop for and prepare food, simple suggestions like “eat vegetables”, “make rice”, and “you can’t live on pizza and ramen” (ramen has MSG, which is a seizure trigger). They need to know they can’t get drunk, can’t get high, and should avoid or eliminate caffeine. I would also suggest that they be offered and encouraged to go to regular counselling. Epilepsy and depression are concomitants, but even if they are not depressed, their illness combined with the stress of school means that they probably need somebody to talk to, and practical advice about how to handle school. If they do get depressed or ill, as they are more likely to do so than other students, it would be good for them to have someone they already know to go to. They should also be advised to take only as many classes as necessary, and when they can, only classes they are comfortable with. Decent housing and a little guidance would have saved me a lot of misery. At no point should they feel like they are being told they “need help”, but they often do, and it should be there for them.

Finally, I want to say that I have had a lot of negative experiences with telling people about my epilepsy. Most people are sympathetic. However, when someone finds out you have epilepsy, especially a professor or employer, you often loose their confidence, or fall in their estimation. The reality is when you disclose to someone you are putting yourself at risk. All other things being equal, a professor will put their energy into helping a healthy student, rather than one with a brain disorder. There is the temptation for an instructor to think that a simple mistake or inconsequential shortcoming is evidence of incompetence. I find it’s better to keep it to myself, even if I have an obvious failure. People usually forget about a mistake, they don’t forget about epilepsy. Everyone is different, and has to make their own decision about disclosure. You can advise students that if they disclose to someone, they should disclose only as much as absolutely necessary. Sometimes people with epilepsy feel like they have to spill the beans, but professors usually only want to know what is absolutely necessary. For example, if a student has a seizure and needs to stay home the next day, they can say they were “not feeling well”. That’s all the instructor needs, or cares to know.

Thank you,

Matthew
Hi Matthew,

I commend you for writing so much valuable information about struggles faced by students with seizures.

The situation is much more worse than you have described. It starts right from the elementary school. You know it better than anyone. This society treats folks with seizures very badly. I have already seen it first hand within 6 months but it has made me more determined to do the right thing for my son.

I do not have seizures but my 9 year old son has suffered from them. He is seizure free for last 6 months. He does not take any medications.

Regards,
Jay
 
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Matthew74

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Jay, I was diagnosed when I was 12. Apparently I was having seizures in school for a short time, but I don't remember that. The only people I had problems with were the adults. I had to be taken out of one class because my teacher was being a jerk. I remember him hassling me about putting my head on my desk and rocking in my chair. I don't remember him being terrible, but he must have been pretty bad (my dad said something about it one time.). I had another teacher who told me, not very nicely, "The other kids ask me, 'Whats wrong with Matt." I don't know why he said that. When I was only having infrequent nocturnal seizures I was kept out of swimming class. They gave me the choice of going to the library alone during that period, or of sitting in the bleachers watching everyone swim. I've always had problems with teachers (my personality), but teachers could be very insensitive and some of them treated me like I was a discipline problem, especially for falling asleep. I'll write more later...
 
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