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Communicating with Your Healthcare Team: a Two-Way Street

"There are a lot of good reasons to build good working relationships with your doctors."

After Epilepsy Advocate Deborah underwent surgery for a brain tumor in 2005, she began having moments of “absence.” Within a few weeks, she was diagnosed with epilepsy. In the years since, Deborah has learned the critical importance of engaging with every member of her healthcare team.

"There are a lot of good reasons to build good working relationships with your doctors".

One of the biggest? Being able to trust that the medications all of your different doctors prescribe won’t conflict with the other medications you’re taking. You have to be able to trust that your doctors are thinking about potential contradictions and interactions. Once, I had a doctor prescribe some medication for me. I asked his nurse if it was going to be a problem with my epilepsy medication, and she told me no, don’t worry about it.


When I went to my pharmacist, it was a different story. Fortunately, I had a good relationship with my pharmacist, and he understood my complex medication needs. When he said there could be an interaction, I listened. He told me to keep track of how I did with the medication, and sure enough, I ended up having seizures. I went back to the doctor and got on a different medication. But when I took the new prescription in? My pharmacist said, “He gave you the exact same medication!”


This was a teachable moment: double check everything and assume nothing. Here’s another: When I went back to the doctor a second time, he kind of dismissed my concerns. What did I do? I dismissed him as my doctor. An important part of building a good relationship with your healthcare provider is knowing when your efforts are a one way street, and when it’s time to walk away.


Luckily, those moments have been the exception and not the rule. Not only was I lucky to find a good pharmacist, I found a great epileptologist too. But there was still a learning curve not for them, but for me. I had to learn to speak up and raise the alarm immediately if I was having a side effect or reaction. I kept telling myself it was all in my head, and if I just waited a while, it would go away. Don’t do that. I’ve visited the doctor and described what I thought was a side effect, only for the doctor to say, “That’s actually a different type of seizure.” Speak up and ask questions, even if you think it’s in your head, because your healthcare team needs to know.


When you’re asking questions, make sure you understand the answers; it’s okay to say, “Could you explain that in patient friendly terms?” And don’t let doctors brush you off with “Oh, it’s all explained in the label.” You have the right to ask why your doctor is prescribing a medication and to make sure they’re taking all aspects of your health and well being into account.


One thing I’ve found that helps is being prepared for my appointments by taking notes about what’s happening and writing down all of my questions in advance. And whenever my doctors are prescribing a new medication, I don’t just ask what the possible side effects are. I ask which ones I should be most concerned about, what do they look like, and what should I do about them? A good doctor will take the time to listen to your concerns and actually address them.


Finally, remember it’s not just about building a good relationship with your doctors, but with your doctors’ entire office staff. When you call your doctor’s office with an urgent message, you want to make sure that the person on the other end of the phone understands why it’s urgent. At least today there are lots of options for getting in touch with your doctor and staff phone, email, personal visit, and online patient portals. There’s really no reason not to get a timely response.

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EpilepsyAdvocate is a community of people living with epilepsy, their family members, and their caregivers.