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People with epilepsy can still experience social avoidance due to their condition – Study

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A study recently featured in leading epilepsy medical journal, Epilepsia, has investigated the impact the condition can have on a person’s friendships.

The study was conducted by researchers in Germany and their findings are ones which will perhaps not come as a surprise to many people living with epilepsy in Ireland. The researchers concluded that people with epilepsy can still experience social avoidance, and this can increase when a person’s seizures are more severe.

As part of their research, 64 people with epilepsy (PWE); 64 relatives of people with epilepsy; and 98 controls (members of the public with no connection to epilepsy) were surveyed using a Likert scaling method. This is a method which measures either positive or negative responses to a statement. 

The statements put to them described a person who was varied by the dimensions of age (younger, same age, older), gender (male, female), disease (healthy, mild epilepsy, severe epilepsy [generalized tonic–clonic seizures], diabetes), origin (German, non-German), contact (phone/internet, activities at home, activities outside), frequency of contacts (weekly, monthly), and distance (around the corner, 10 km away).

The main finding of this study was that the controls (individuals who have no prior exposure to epilepsy) were less interested in a friendship with a PWE with mild epilepsy (−3%) and even more avoided PWEs with severe epilepsy (−12%), whereas in PWEs with tonic–clonic seizures, a mild form of epilepsy was actually conducive to friendship (+7%).

The study therefore highlights that social avoidance of people with epilepsy exists and that people who have had no prior contact with epilepsy are more reluctant toward friendship with PWE. There was no discrimination regarding the control disease of diabetes, indicating that social avoidance relates specifically to people with epilepsy.

We know that the findings will not come as a surprise to many people reading this article. The research highlights why awareness-raising efforts are so important in order to break down perceived stigma of the condition across the globe.

In an Irish context, a survey of the Irish public we commissioned last year found that 78% of the Irish public believe there is a social stigma attached to epilepsy, while 91% agree that there is a lack of understanding of epilepsy amongst the general public. The overwhelming majority of people recognise and acknowledge the need for further awareness and education around epilepsy, which is why the work we continue to do is so important – and why it is equally important that people with epilepsy and their families be open about their condition to help break down the barriers that still unfortunately exist for many living with the condition.

If you need help in talking about your epilepsy to others, visit the ‘How2tell’ resource on our website – which provides practical and useful information & advice on talking about epilepsy with others. We are also here to offer information and support on your journey with epilepsy. Get in touch with your local Community Resource Officer – visit the ‘Our Services’ section of our website for details of your local CRO.

To read the full study, visit the ‘Wiley Online Library’ website.