At some time or another, everyone with epilepsy has to think about telling other people. That involves weighing the advantages and disadvantages of telling friends, family members, and employers; it means answering, “Who should I tell?”
Never an easy decision, it’s one that I dodged for years, apart from my first two employers; one because my very first seizure took place in the office, and the other because that office was right next door.
But after that, no one was told. It was my secret and that was the way it was going to stay.
Fortunately, I did tell the woman who was to be my first wife, along with what to do and what not to do if anything happened. I say ‘fortunately’ because it did, some months before we were married. She didn’t panic, she just coped.
Although tests prove that my brain is still affected by epilepsy, and seizures that have happened have been grand mal type, something has allowed my life to only be disrupted in such a way on two occasions.
Tell for your benefit
The last seizure that made me lose consciousness was in 1976 —yes, 40 years ago — which has made my epilepsy easy to conceal. However, there are still occasional instances of my right hand shaking, which I consider warnings, and have enabled me to avoid full-blown seizures. In fact, they were mini-seizures in their own right.
It was not until 2002, during detailed checks that led to the additional diagnosis of having multiple sclerosis, that the neurologist said tests confirmed that I still had epilepsy and changed my medication to a more ‘modern’ one. Since then, total control; not even one involuntary shake of my hand.
Getting back to the issue of telling people, my experience is that you need to decide what’s in your best interests and to tell those who need to know for your sake. Apart from the legal necessity of informing certain statutory bodies, it is no one else’s business.
Today, with epilepsy under control, I feel free to talk about the disease, but sympathize with those who feel unable to do so.
If you want help deciding, most epilepsy organizations, such as the Epilepsy Foundation, offer advice on who to tell, when, and how.
Note: Epilepsy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epilepsy News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to epilepsy.