You don’t remember your first seizure. Confused, you wonder what happened – the time before and during are a blank.
Not all seizures involve convulsions. One is an absence, another a hallucination, yet another is a pain in the gut.
Your diagnosis comes as another shock. “Epilepsy,” you learn, is a blanket term for a family of recurring seizure conditions.
Two shocks should be enough for any person or for any family. Receiving a diagnosis may also come as a relief, bringing medication, direction, and support with it.
But in time you realize, perhaps with the help of the diagnosing doctor, that you are now different – not as if you’d broken a leg, which heals with time. Your condition stays with you. Once the word “epilepsy” is spoken, your identity shifts. For many you’re now marked with something new and unsettling.
This scenario is playing out now, in this country, to people like you. Anyone with a brain – any child or adult – can have a seizure. Anyone can find their sense of self injured by those lacking any empathy or understanding for your condition. Anyone with seizures can be stigmatized.
In addition to this sense of “stigma” as a “marking,” it often implies that others feel you are taking up more than your share of emotional and physical space. When you are ostracized, your family may lose face as well. Your community, in turn, loses some of your skills, insights, and unique company.
So how do we resist diminishment by this neurological condition?
First, remember that “epilepsy” does not define you. You are much more.
Second, take care of yourself. Stigma is most strongly associated with visible seizures, such as grand mal seizures. Take the medications prescribed to control such seizures, as directed, on time. Don’t complicate treatment with alcohol, recreational drugs, self-medication, or lying to your medical provider. Even small non-convulsive seizures take a lot of energy. Budget your time wisely. Take your time. Occupy your space. Celebrate what remains. Consider what you eat, how you exercise, what lightens your heart, what calms your mind. First-person accounts will remind you that you are not alone. Your physical and mental health will arm you against stigma.
Third, education is key, for you and others. Learn all you can about your condition. No two of us are alike. Keep a diary. List your questions. Ask your neurologist. If her answers don’t satisfy you, ask for a referral to an epileptologist. The librarians of your nearest medical school can help you. The internet is rich in resources, from the National Institutes of Health, to blogs and local support groups. If your condition is legally disabling, learn the laws that govern disabilities. The more you know, the better equipped you are to combat the myths surrounding your condition.
Last, assembling a personal support group, starting with your family and friends and your medical team: (this might include neurologists, internists, nurses – who are often more supportive than doctors – technicians, and pharmacists). If you or your family decide to use psychotherapy, choose a therapist with experience in neurological disorders. Be willing to discuss with any of these people how stigma affects you. If they don’t have your back – don’t blame yourself – move on. In larger urban areas, as well as online, you can find support groups full of caring people ready to listen and advise. Stigma lessens when “I” becomes “we.”
When you’ve begun to feel centered, advocate for yourself. This means educating others (including some medical practitioners) and stating clearly what you might want or need. Wear a medical alert bracelet or necklace. Approach your employer or place of learning, if necessary, with a well-thought-out script detailing what they might expect in your presence and how they might best respond. The more you can speak out knowledgeably, the less you can be seen as a victim or an object of pity. If you’re feeling bold, offer to speak with local authorities, such as the local police, bus drivers, and teachers, about your condition. Each time someone sees you as a competent person first, the stigma lessens.
Fighting stigma begins with those of us who experience it. It’s hard work. Often it feels thankless or useless. Take back your identity. To fight for yourself is to fight for everyone with a similar diagnosis.
*Since changed to “temporolimbic dysrhythmia.”
This article was informed by my own experiences; by Atlas: Epilepsy Care in the World, World Health Organization, 2005; by Seized: Temporal Lobe Epilepsy as a Medical, Historical, and Artistic Phenomenon, by Eve LaPlante, Open Road Distribution, 2026; by hesperian.org, where I volunteer; and by Phylis Feiner Johnson and all the contributors to her award-winning site epilepsytalks.com. Many thanks!