Blog #59: I Have Epilepsy. Whom Should I Tell? When?

            Whom should I tell? This question is on everyone’s mind that has epilepsy. One can be stressed filling out job and military applications, insurance and driving-license forms. Dating, too, and other relationships, can be complicated by these questions. Fibbing and not disclosing your epilepsy could lead to everyday torture when you are afraid that a seizure could expose your condition. Patients often discussed these critical matters with me in my neurology office and asked for my guidance.

            The Epilepsy Foundation’s website goes into these considerations as noted here: According to the Equal Employment Opportunity Commission (EEOC) and the Americans with Disabilities Act (ADA), when you apply for a job by law a prospective employer may not ask you if you have a medical condition, including epilepsy. However, the employer is allowed to ask about your qualifications to perform the job, such as whether you possess a driver’s license or if you are capable of operating heavy machinery, etc. If you disclose your epilepsy diagnosis, the potential employer may inquire whether you would need any special accommodations (within reason). Be aware that not all accommodations must be granted and an employer is allowed to ask for more information about your health when performance problems related to your medical condition appear. In this situation, the employer is required to keep this information confidential from co-workers and other managers even if they observe a seizure in the workplace.

            What about dating and revealing your epilepsy to potential life-partners, relatives and friends? How much do you reveal? When, especially if your epilepsy is not evident at the time? You probably have adapted to taking pills, driving restrictions, and swimming and bathing precautions, but these things may not be easy for others to accept. Abandonment by friends and lovers may occur. You probably are very experienced with dropped relationships. You handled them, or may still be trying to get over them.

            Should you reveal your epilepsy immediately, on a first date? I recommend that you consider waiting until your second meeting in order to gauge your new relationship. Beware that when you disclose this information your prospective partner’s character will be “revealed.” You may already be very experienced with dropped friendships. Be honest; secrets will undermine relationships. After all, 70 percent of epilepsy is well or completely controlled and inherited epilepsy is uncommon; it may even be you who is doing the rejecting as much as the other person. Consider that you may be surprised by their reactions upon learning of your condition: they may be unfazed by it. Yes, that happens. When you find someone accepting your condition—and I encourage you to believe that most likely you will―you may be on your way to a solid relationship. It can work out. They could even care and worry about you more than you do; they will be most supportive.

            I refer you to an excellent article by Gina Shaw titled, “The Dating Game” in Neurology Now; June/July 2015. All of my epilepsy blog followers should subscribe to Neurology Now; it is a free official publication of the American Academy of Neurology that deals with neurological conditions geared to the lay reader.

Lance Fogan, M.D. is Clinical Professor of Neurology at the David Geffen School of Medicine at UCLA. “DINGS” is his first novel. It is a mother’s dramatic story that teaches epilepsy, now available in eBook, audiobook and soft cover editions.