Be your own advocate

The best way to get the care you need is to be your own advocate. Living with epilepsy and taking medications that affect mood and thinking patterns, can degrade self esteem. This can take a toll on the willingness to speak up and say, “Hey, that’s not right!”, whatever ‘that’ may be.

There are times when it is important to let your doctor know about new side effects your medicine may be causing. Not only because it can negatively impact your quality of life but also those side effects can be doing more damage than you realize.

Then there are times when you may be having little seizures that seem like “nothing”. But since seizures beget seizures that means each seizure makes you more open to more seizures. It’s always worth mentioning.

Or it could be you just have a small question but you don’t want to “bother” the doctor between visits. Well, chances are you won’t. It may well be something that the administrative staff can handle and the doctor won’t even know you called.

Just think of it like going to a restaurant. You can go to the best restaurant in town, but if you don’t open your mouth and tell the staff what you want then you’ll be seated by the kitchen and wait for an hour to get cold food.

Silly analogy I know, but it can get that bad.

It just boils down to don’t feel bad about asking for what you want. Or for telling the doctor what you need. Remember you are paying for this service. If you keep that in mind it will help.

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Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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