Co-living means sharing a lot of your life with the person or people in your home. While at times it’s as simple as splitting the bills, co-living also entails sharing the intimate parts of your life — even when you don’t mean to. Physical and mental health play a huge role in the everyday lives of roommates, and when one party is struggling with something, the other needs to know how and when to help. November is National Epilepsy Awareness Month: If you live with someone who has epilepsy, find out what you should or shouldn’t be doing to help them live better.
About 65 million people around the world have epilepsy — over 2 million in the United States., alone, according to the Epilepsy Foundation. And though one in 26 people in the U.S. will develop epilepsy at some point in their lifetime, the condition is still widely misunderstood.
Sarah Preston, 22, a senior studying strategic communication and public policy at American University, was diagnosed with epilepsy in 2008. Though Preston considers herself fortunate, as she has a controlled form of epilepsy and only has a seizure about once every six months to a year, she says people’s lack of knowledge can make it difficult to talk about it.
“A lot of people don’t know a lot about the condition,” Preston says. “A lot of people hear the word epilepsy and they kind of freak out.”
By definition, epilepsy is a neurological condition that affects the nervous system in which abnormal electrical discharge in the brain causes seizures. The seizures can range from mild to convulsive, explains Dr. Ruben Kuzniecky, Co-Director of the NYU Epilepsy Center and neurology professor at NYU. Kuzniecky says there’s still stigma attached to epilepsy due to societal misconceptions, and one of the most basic things people should know: There is no “one” epilepsy.
“Epilepsy is not one disease. It’s really an expression of underlying, different conditions,” Kuzniecky says. “That’s the reason you have epilepsies that are benign and epilepsies that are malignant to the point that they cause a tremendous amount of havoc to patients.”
Still, Preston has always made it a habit to tell her roommates about her condition, including the three she currently lives with. Her advice: Be aware of your roommate’s condition, what kind of seizures he or she suffers from, and ask questions about how you can help.
“Make sure to explain to them what the condition is, what it means, and how they should respond [if you have a seizure],” Preston advises. “When in doubt, call the hospital, but listen to what your roommate says.”
Learn What to Do During a Seizure
Just like there’s no singular epilepsy, there’s no one type of seizure. And because they can vary in severity and manifest differently, some seizures may go under the radar if you don’t know what to expect and how to recognize the signs.
“One [type of seizure] is where you only have a click in your hand or a little jerk, and you don’t lose awareness,” Kuzniecky says.
“The second type is where you lose consciousness or awareness; you’re confused, you have no memory of the event, and you don’t know what happens to you during the event. And the third one is a convulsive seizure. All your limbs get stiff, and you fall and jerk; and you’re out for a longer period of time.”
Kuzniecky says roommates can do their part by making sure their roommate remains uninjured during the seizure. If someone is having convulsive seizure, here’s what you should do:
- Lay them on their side on a floor or bed, so saliva can leave the mouth if necessary.
- Don’t put anything in their mouth, and be sure they are breathing normally after the seizure.
- During non-convulsive seizures, make sure the person doesn’t do anything dangerous during the episode or in the moments of confusion afterward. Remove any objects from their hands, and gently try to encourage them to sit down until the seizure is over.
Kuzniecky says it may be necessary to call 911 depending on the kind of seizure, but again, check with your roommate about what’s normal to avoid overreacting. Preston, for example, advised her roommates not to call 911 unless her a seizure lasted longer than 60-90 seconds, as hers typically lasted about 30 seconds.
“More often than not, I’ve had a seizure around a roommate or two, and they do get nervous and call 911 anyway, which is fine and understandable,” Preston says. “A lot of people don’t know how to react when they see someone have a seizure, and it can get scary.”
“Usually after I’ve had an episode, I don’t really get asked about it by my roommates anymore and things return to normal, which is really great and I really appreciate it.”
Encourage Them to be Healthy
Kuzniecky says roommates can be helpful by simply encouraging a healthy routine. It’s extremely important for those with seizure disorders to take their medication on time and to avoid behaviors that can trigger seizures such as drinking, using drugs or not sleeping regularly. Another way you can be helpful is to make sure your home is safe for them by not leaving out sharp objects or things that they can trip over.
Depending on how often seizures occur and your roommate’s personality, however, he or she may need very little looking after. For someone like Preston, who has lived with epilepsy for some time and whose condition is also largely under control, her roommates aren’t very involved.
“I’m pretty independent and self-sufficient, so I don’t think I’ve ever told them my regular prevention measures, and they don’t specifically know the medication I’m taking,” Preston says. “I try to keep them as calm as possible about it, so I don’t ask for them to help, and usually they forget about it or don’t address it again.”
Be Understanding and Compassionate
For some, living with someone who has epilepsy may be as normal as living with someone who doesn’t. But for those with epilepsy, the condition can have unseen consequences. Preston struggled in her early college days to speak openly about her condition. But today, she says she understands how being honest helped her set the tone for how she wanted others to react.
“Because I have such a controlled and mild form of epilepsy, it rarely comes across that I am epileptic,” Preston says. “Usually I’ll tell my roommate on the first day, and it’ll just stay in the background because the kind of epilepsy I have isn’t recognizable on the outset, so the relationships haven’t really been affected at all, which is great.”
The most you can do as a roommate is be respectful and mindful of what your roommate is going through, even if you can’t readily see it. Acknowledge that epilepsy is something to be taken seriously, Kuzniecky advises, and that you can play a large role in helping your roommate live with it.
“Be sensitive to the fact that they have a medical condition like any other, and that you can be kind, help them live with this condition and making their life a little bit better.”