My first-ever TED Talk titled “Why I speak up about living with epilepsy” went live towards the end of May, and it had over 50,000 views within its first few hours. I have received emails from people across the globe telling me how they cried through it while also applauding me for my courage to speak about living with epilepsy, since it is something about which people rarely publicly discuss.
In my talk, I said I reduce my seizures from several times a day to a handful spread throughout the year and many people have asked me how I did this.
One of the greatest misconceptions about epilepsy, a neurological disorder generally characterized by seizures, is that it is a death sentence. That those with the diagnosis are not going to amount to much. That they are likely to remain home bound for the length of their life and might need a full time caregiver / guardian. These are narratives I have heard over and over, and most people are shocked to hear that I live on my own and that my awareness creation work involves a lot of traveling on my own.
Before I got to where I am, there were days where I had 2-3 seizures a day and they left my legs numb and my speech slurred. I stayed indoors a lot because I was either having a seizure or recovering from one. Through all this, I longed for days when I would be out and about.
So how did I get from there to here? These are some of the things that helped me through my journey and can help you, too.
1. Proper Diagnosis
Epilepsy is a medical condition that requires medical intervention, especially at the onset. A proper diagnosis can only be given by a trained professional once they rule out that your seizures are not a sign of something else.
Once you get a proper diagnosis, adhere to the doctor's advice, prescription instructions and appointments. It may take some time for your body to get used to the medication, meaning you will have some drowsiness and fatigue, but this usually fades after 2-3 weeks. If it goes on for over a month, it is advisable to seek your doctor's advice on the best way forward.
2. Be kind to yourself
There are a lot of myths and misinformation about epilepsy, making it hard for those who have been diagnosed to accept it. The process of healing begins with acceptance, and the sooner one accepts, the easier it is for them to become proactive in their healing journey. The journey to healing is not instant, it takes time and depends on various factors from the environment one lives in, to the type of support one has to one’s medication access.
3. Epilepsy type and triggers
There are different types of epilepsy, mostly characterized by the type of seizure one gets. It is important to learn more about your type of epilepsy and how to handle it as well as your unique triggers. My key ones are lack of food, lack of rest, missing medication, stress, flashing lights and camera flashes, while other people have mentioned menstruation, fire, water, and heights as their triggers.
Keeping a seizure diary is a nice way to keep track of your seizures, noting when they happened, where you were, and what was happening before the seizure. It also helps you and your doctor keep track of the frequency and time of day you get the most seizures and then together you can chart a good treatment plan.
4. Additional Therapies
Though the doctor and medication play a critical role in the treatment, it is important to include additional therapies into your treatment plan to compliment and also reduce over-reliance on medication and speed dialing the doctor.
Talk therapy or counseling is a good place to start, especially if you and/or your immediate support system — parents, spouse, or children — are having a hard time accepting the diagnosis.
Group therapy helps if one would like to build a community with other people living with the diagnosis. There are also group therapy meeting for caregivers and family members who would like to interact with others and learn how to offer better care and support to themselves and their loved ones living with epilepsy. Some groups get into advocacy mostly when there is a common issue faced by the members.
Other forms of therapy include having a spiritual practice, art therapy, music and dance therapy, ecotherapy, and writing.
5. Live and love life
Do not wait till you are seizure free to do the things you love. While there are some things that might trigger your seizures and those are to be avoided, everything else should not be on hold. Despite your diagnosis and the narratives you have heard about living with epilepsy, set goals, go after them, learn from past mistakes, know your limit and triggers and do not give up on yourself and the things life has to offer.
There is no one size fits all formula in living with epilepsy, therefore one needs to be proactive to find the combination of things that work for them and the environment they are in.
Sitawa Wafula is a mental health consultant who runs My Mind My Funk, a mental health resource hub. She is also a TED Speaker and an Aspen New Voices Fellow.