Where to get emotional support for epilepsy

Written by DanielleBosely MS, NCSP | Fact checked by Psychology Dictionary staff 

For the millions of people who are diagnosed with epilepsy, life is far from a walk in the park. In fact, they can’t take a walk in the park without worrying about what would happen if they were to seize right there in the middle of a public space where strangers would likely stop and stare. Would anyone reach out to help them? Would someone call 911? Is that always necessary? Should they bring a companion? That might seem like an ideal solution, but many people with epilepsy struggle to keep friends on hand. Others just don’t want to embarrass the people they love.

Friendship

It is difficult for anyone with a chronic illness to relate to someone who doesn’t have one, and vice versa. People with epilepsy often find themselves feeling bound by their illness. It traps them and makes them feel like they are limited in what they can engage in. From an intense movie to a sports game to real life relationships, any kind of emotional response that triggers intense feelings in the sufferer can trigger an epileptic response. Many people with epilepsy wonder who would want to go to the movies with someone who can’t be emotionally moved by a film or startled without seizing in the theater.

On the flipside, other people may find it difficult to maintain a friendship with someone who has epilepsy. Sometimes, it’s difficult for the sufferer to talk about. Well-meaning friends who ask questions may be curious about their friend’s illness, but too many questions could make their friend more standoffish. Others may feel inclined to protect their friend from their own disease. No, there’s not really anything anyone can do to safeguard someone with epilepsy against seizing, but they might try to filter what information they share with you or tip toe around the way they treat you in effort not to upset you. This can make it difficult to have an authentic relationship with others.

Still, we all need friends and those who live with epilepsy are in desperate need of a few that they can lean on for support. Where do you find lasting friendships with people who care and understand? Empathy like that often comes in the form of someone who truly gets it. In other words, someone else who also has epilepsy. They are the only friend you’ll ever make that honestly understands what you go through. Where can you meet this kind of friend? Usually, a support group. These groups can make a world of difference in a person’s life just by exchanging stories and discussing difficult moments in your lives and the way epilepsy has shaped them.

Therapy

When a night out with friends just won’t cut it, an afternoon with your therapist might. Cognitive behavioral therapy is the go-to treatment for individuals who suffer from epilepsy. CBT cannot control epilepsy, but it can help you to maintain control over your emotions, which could otherwise trigger a seizure. It can also assist you in bouncing back from upsetting events, like seizures, and dealing with outside pressure from loved ones, as well as glares from onlookers. Epilepsy does not have to be your dirty little secret and CBT will help you bring it out of the closet.

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