Managing your Epilepsy (Part 2): Communicating with your Team

Close up of two people shaking hands over a table, representing jobs for people with epilepsy. - Clinician's Corner
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by: Professional Advisory Board Member, Tess Sierzant, APRN, CNS

In the last Clinician’s Corner, Joanne Rogin, MD, spoke about the connection between managing epilepsy and managing medications. One of the key points she stressed was the importance of working with your physician, nurse, pharmacist or other member of your team to figure out ways to remember to take pills as prescribed. As our lives get busier and busier, however, it also seems to have become easier and easier to forget to do things that are important.

What can you, as a person with epilepsy, do to better manage this condition that is part of your life? How can you work with your team to find ways that work best for you?

Knowing who treats epilepsy is important. Primary care providers (PCP) are important team members that treat a broad number of health conditions. Everyone should be connected with a primary care provider. A PCP serves an important role in coordinating all the other members of your team. The partnership you have with your PCP is an important one.

Your action step: Find and regularly see a PCP to help keep you healthy overall.

An accurate description of your seizures is very important for a provider to know. Why? It is important in helping to make an accurate diagnosis of the type or types of seizures you have. Many people do not remember what happens during their seizures. When others are with you during them, have them write down a step-by-step description of what they saw or record what they saw on your cell phone. It does not have to be in medical terms. Just describe what was going on before, during, and after, as if you were telling about a movie you had seen. The more detail, the better.

Your action step: Have those around you – family, friends, co-workers, others – write or record descriptions of your seizures and bring them to your physician visits.

Treatment options for epilepsy have expanded in the past several years and a specialist – a neurologist – is going to have more detailed information than a PCP, however, even more specialized is an epileptologist. This is a provider who has specialized in treating those with epilepsy and knows the most about the ins and outs of treatment. Asking for more help from specialists is important if your seizures are not controlled or you have side effects that cannot be corrected.

Your action step: Ask to see someone more specialized when you think you need to.

Communication is an important way you can better manage epilepsy. That might seem too simple, but if we dig into it, there is a lot to consider. There are many ways to communicate these days. We use our voices a lot. We know, though, that verbal communication can get complicated. Our ears are part of the communication process, too. And although many of us consider ourselves very good listeners, listening does not mean just being silent and letting others do the talking. It means really hearing what the other person has to say, trying to understand, and then reflecting that back to them. So, when going to see your physician or another team member, you can 1) state back to them what you have just heard, 2) ask questions to clarify what may not make sense, and 3) after doing that, then flat out ask, “did I understand you correctly?” to make sure you truly are getting the information they intended to give to you.

Your action step: Think about how you are communicating with your providers and work on improving.

Others may say that a lot of communication takes place by using email, social media, or other electronic methods. More and more tools are becoming available to link you up with your own electronic health records. There may be ways to send messages directly to your team that can save the time of making an appointment and going to the office.

Your action step: Find out what technology is available for you and then use it to improve communication.

Think about how you prepare for an office visit. Besides putting it on your calendar, do you routinely make a list of concerns that you want to talk about with your physician and team? Doing so helps you to focus the discussion on what you need and gets you mentally ready for the visit. Sending your list ahead of your appointment can help your doctor be more prepared, too. Starting your visit by saying to your doctor, “I have a list of five things I want to talk with you about today,” might be a good way to get the conversation going.

Your action step: Prepare for your in-person visits; write things down that you want to discuss.

Your voice is the most critical voice in managing your epilepsy. You are the key part of the team. All team members need information from the others, including you. No one can read another person’s mind. It is important to thoughtfully answer questions your doctor or nurse asks you, and to be as honest and thorough as possible. Without accurate information, an accurate and thorough job is harder for them to do. You won’t get the most out of them. So instead of saying, “Fine,” or “Okay,” when the doctor asks you how you are doing, think about a clearer way to get that across.

Your action step: Give voice to your concerns. Your team needs to hear them to give their best to you.

Finally, keep believing in yourself, in your ability to get information, and to best manage your epilepsy. Whether that means taking your pills on time, staying connected regularly with your doctors and other team members, or communicating what is important to you or what is bothering you, your team is ready to give you their best, if you give them yours. 

Action Steps you Can Take to Better Communicate with your Team

  • Find and regularly see a Primary Care Provider to help keep you healthy overall
  • Have those around you – family, friends, co-workers, others – write or record descriptions of your seizures and bring them to your physician visits
  • Ask to see a more specialized physician when you think you need to
  • Think about how you are communicating with your providers and work on improving
  • Find out what technology is available for you and then use it to improve communication
  • Prepare for your in-person visits; make a list of things that you want to discuss
  • Give voice to your concerns. Your team needs to hear them to give their best to you