Dealing with the stigma and discrimination of epilepsy

Stigma in epilepsy can mean a number of things, whether it’s people believing untrue myths, people being disqualified from activities they feel they could take part in or simply just being treated differently due to having epilepsy. 

Stigma and discrimination take many forms. A common example might be children being left out of school activities or social occasions because those responsible don’t feel confident enough to care for a child with epilepsy. For adults, it may be that they feel they have been overlooked for a job that they are perfectly capable of fulfilling on the grounds of their epilepsy. Of course, being left out of things can be a huge source of unhappiness for both children and adults.  

Common misconceptions

In many cases, it’s misconceptions and myths that contribute towards the stigma that surrounds epilepsy. A lot of these untruths are portrayed in the media which leads to a wider misunderstanding of epilepsy and a negative attitude in general.

One of the major misconceptions is that seizures are always ‘dramatic’ emergencies that result in the person falling to the ground and flailing wildly. This is compounded in many entertainment sources which depict ambulances, flashing lights and paramedics, Of course, this is a possibility, but in many cases a seizure isn’t a dramatic occurrence. 

It’s common misconceptions like this that contribute to stigma, such as an employer worrying that employing someone with epilepsy puts them at risk of having a lower attendance due to illness and potentially having ‘dramatic’ seizures in the workplace. 

What are my rights? 

In most cases, epilepsy is considered a disability which is protected by The Equality Act, and as such if you feel that you have been discriminated against you can take legal action. You are protected from being discriminated against in the following situations:

• Whilst you are at work or operating in a professional capacity
• Whilst you are using public services, such as schools and hospitals 
• Whilst using private services, such as restaurants, gyms and shops
• Whilst using public transport 
• Whilst a member (or attempting to join) at a club or association

Of course, there are examples where there is good reason, which can not be classed as discrimination. For example, if you are not eligible to hold a driving license due to your epilepsy, it’s reasonable to be declined for a job as a bus driver. 

Dealing with stigma

Of course, discrimination is one thing, but stigma from your peers is another altogether. For example, there is no legal recourse for a child who is being bullied by other children due to their epilepsy. Unfortunately, it’s a sad fact that children with disabilities are more likely to be bullied. Adults also experience stigma and may find that they’re the subject of ridicule or being treated differently because of their epilepsy. 

In these cases, it may just be a simple case of educating people about epilepsy and helping them to understand it better. A lot of stigma arises as a result of incorrect assumptions, such as every person with epilepsy will be photosensitive when in reality it’s much rarer (3 people out of every 100 with epilepsy). Whilst we would encourage people to spend some time talking about their epilepsy and how it affects them, we would also say not to allow it to become their identity. 

National Epilepsy Training can help…

For more information or advice on dealing with stigma and discrimination, please get in touch. Call us on 01706 373075 or email admin@nationalepilepsytraining.co.uk.