How to Talk To Your Doctor About The Emotional Side of Epilepsy

Everyone, at least once in their lives, is taught to trust medical professionals as the definitive experts. While this can be correct, many people living with epilepsy hesitate to talk to their specialists about the emotional and mental impacts of the condition.

The unspoken reality

There is a common worry that your non-physical concerns might be minimized, or that the only solution offered will be a medication adjustment.

This fear can discourage open conversations, leaving patients feeling unheard and isolated. Whether you have witnessed it yourself or heard it secondhand, many have had a variety of experiences with doctors in their lives.

This hesitancy to discuss emotional and mental health can have substantial consequences. What I mean is the hesitancy can lead to a lack of education, which can lead to misinformation or misconceptions about epilepsy.

This demonstrates how it can be difficult to understand epilepsy due to the invisible side effects that may take a toll on our physical and mental being.

“Why can’t you just go to an epileptologist?”

Epileptologists are doctors who specialize in epilepsy and neurological activity. While these professionals have a lot to offer, accessing one is not that simple.

The reality is that many of us learn about epileptologists via word of mouth or social media. Like any other doctor, transportation and affordability to an epileptologist can be one of the many dilemmas people face.

“Why don’t you tell your neurologist how you are feeling?”

It is essential to be your own advocate during appointments. Your health, both mental and physical, is important for your doctor to know about and understand.

For me, I have learned to bring up matters of mental and emotional impacts as well as my physical health. What I mean is, for instance, going from having a seizure once every 6-14 months to every day in a two-week span. This is both a physical concern and one that could take a toll on a person emotionally.

What To Do?

In order for your doctor to understand you, your questions will need to be asked.

As I learned to ask questions and express my concerns throughout my epilepsy journey, I truly started to understand myself. While people give advice like it is “easy peasy lemon squeezy” asking them questions, reality is cultivating the words to form an articulate enough sentence to where the doctor understands but is forced to give you a more defined answer isn’t easy.

For caregivers or for yourself, here are some ways to get started:

• Ask open-minded questions: “What is this medication?” “How will it help me?”
• Give a transparent answer when asked, “How is the medication working out?” Example: “The medication seems to work but also make me drowsy.”
• Ask about an epileptologist. Get a referral. You deserve the best care.
• Have a support person with you who can also ask questions.
• Practice what you plan to say before going in/waiting for the doctor.