Epilepsy is predominantly an invisible condition. This can bring additional challenges to those living with it. Our Chief Executive, Lesslie Young, explains why awareness weeks like Invisible Disabilities Week are needed more than ever.
I never forget a caller to our helpline talking about how someone had said to them “you don’t look like you have epilepsy.”
How is someone with epilepsy supposed to look? Statements like this illustrate a real lack of knowledge and understanding of the condition and its impact.
They can also be upsetting leaving anyone affected by epilepsy feeling patronised. In the main, there is no malice intended but they do demonstrate the need for continued awareness raising to increase an appreciation and understanding of epilepsy.
Epilepsy is so much more than seizures. Seizures are the most visible outward symptom of epilepsy, but they are only one symptom.
As there is a significant, lack of understanding of the different types of seizures there is also a significant lack of understanding of the myriad of other symptoms.
Not all seizures involve convulsions and can be very subtle. The person may look confused, distant, and not engaging with their environment as you would expect them to.
So instead of coming to the assistance of that person who is experiencing a non-convulsive seizure, who has no control over that seizure activity or memory of it, people often assume that person is drunk or on drugs and walk by.
A caller to our helpline recounted how she had a non-convulsive seizure in public. As she was slowly coming around, but still unable to communicate, a passerby literally stepped over her and said, ‘look at the state of her’.
This must be incredibly distressing to hear especially when you are at your most vulnerable.
Epilepsy is not just seizures
Then there are all the other not so visible ways epilepsy can affect a person. Few people will know that people with epilepsy can be affected by memory issues.
For some, this can be very debilitating. Some may not even remember significant events in their life. Seizures can also erase the memory of events leading up to a seizure, and immediately after.
These memory gaps can leave a person vulnerable, open to criticism and judgment.
The side effects of medication can be invisible too. Some people complain of unending fatigue, feeling light-headed, brain fog, lack of motivation, and also a change in mood and behaviour.
The person may be written off as lazy, unmotivated or moody, ignoring or simply not knowing this can be a direct consequence of epilepsy and the need to take medication to control seizures.
Many people with epilepsy are also affected by anxiety, a loss of confidence, and self-esteem.
The fear of having a seizure in public, being vulnerable and the fear of being judged can and does make some very reluctant to leave the safety of their own home.
People can be labelled as unsociable or difficult to be around when this is a completely understandable result of the unpredictability of seizures.
Try not to make assumptions
A person with epilepsy will often keep these many struggles to themselves, becoming masters in adapting and covering up. All you see is a person who is just like anyone else.
Assume less and be less judgmental. Just because someone walks into an accessible toilet, with no visible mobility issues does not mean they should not be using these facilities.
People with epilepsy will often seek privacy if they feel a seizure coming on. An accessible toilet can be a safer space than the usual crammed toilet cubicles.
Having more space reduces the risk of injuries during a seizure, and there is an emergency pullcord to call for help if needed.
We should use Invisible Disability Awareness week as the starting point to talk about the many invisible elements and challenges of epilepsy.
Please help us to raise awareness and increase the understanding of this very common condition by sharing our website.
We have a comprehensive information section that explains the many aspects of living with epilepsy.
If you know someone who could do with more information, let them know about us, and get them to contact our helpline 0808 800 2200 or visit our website.