Why does epilepsy feel like a hidden disability?

Question

Hello doctor,

I do not even know if this makes sense to explain, but I will try. I have epilepsy and have had it for years, but I look completely fine from the outside, and people at work have no idea. My last electroencephalogram still showed some abnormal activity even though my seizures are somewhat controlled on medication.

But every time I have to ask for accommodations or explain why I cannot drive or why I need extra breaks after a bad episode, nobody takes it seriously because they cannot see anything wrong with me.

Why does epilepsy feel like a hidden disability when you are 49, and how do I make people around me understand without having to have a seizure in front of them to be believed?

Kindly help.

Answer 1

Hello,

Welcome to icliniq.com.

Thank you for the query, and I am glad you shared it with me. It takes incredible effort to live with epilepsy and to face the stigma as well.

First of all, I wish to assure you that epilepsy is not only a manageable but also a curable disease. All you have to do is take the medicines regularly.

Secondly, you need to follow some rules, such as getting adequate sleep, avoiding high-risk areas such as around fire or climbing to heights, and avoiding driving for a certain period of time.

Driving is important, but it is for your own safety. I can understand that it is very difficult to remain in a state where you can have a seizure at any time, but trust me, it is the same risk as anyone can have a cardiac arrest if you are taking the medicines as prescribed.

It takes time for the electroencephalogram to return to baseline, but the good news is that you did not experience a seizure.

I believe you need to tell others so that they may know that you are suffering from a disease. Sometimes we think that others know, but most of the time, they do not know. If we tell them, they usually understand.

I think the tough part is over. Now you are getting better, and after some time, you will be able to live an independent life as before.

If you are experiencing a low mood, loss of interest, or constant anxiety that is interfering with your life, please book a full assessment. I will be happy to help. Meanwhile, you can follow sleep hygiene and choose cognitive behavioral therapy or supportive psychotherapy.

I hope you are satisfied with my answer. For further queries, you can consult me at iCliniq.

Thank you.