Finding Doctors While Living with Epilepsy

This post is part of the Epilepsy Blog Relay™, which will run from November 1, 2019, to November 30, 2019.  Follow along!

As a patient living with epilepsy, my health care team is one of the most important things to me outside of managing my seizures. Living with a chronic illness is more than the everyday management of the disease. It’s the doctors who help you along the way to achieve the level of independence and freedom you may have/want. For me, I went through building a great healthcare team and then needing to fire a doctor, to being forced to rebuild again. Yes, I had to fire a doctor. If something doesn’t sit right with you in any area of your life, then it has to go, no matter who or what it is. Your doctor should be a partner in your care, its okay to walk away.

If you’ve been following me for a while, you know that I am not shy about sharing my struggles with epilepsy and weight loss. It’s more than just popping a pill or changing my diet. It goes deeper than that. In November of 2017, my primary care physician suggested that I see a nutritionist to help with my food and diet struggles. I trusted my PCP, so I didn’t hesitate to follow her instructions. During the initial appointment, I disclosed that I’ve lived with epilepsy my entire life. Figured this would help in planning my treatment options. The first couple of visits went okay. I was learning about food and focusing on my relationship with it. Then it came down to her telling me what to eat. In previous posts, I shared that some foods are seizure triggers for me. When Dr. S suggested I try meal replacements, I immediately asked to look at the label. Among the ingredients, I noticed it included aspartame. I advised the doctor that this was a seizure trigger for me, and I will not be using them. On another occasion, she suggested it again. I once again stated it was a seizure trigger. She then accused me of lying about my epilepsy because SHE had never heard of it triggering seizures. At that point, I knew she was not a physician that needed to be apart of my team.

Fast forward to November of 2018; I received the dreaded letter in the mail. Dr. B (my PCP) was leaving the clinic. She had been my doctor for eight years. She was there from the gallbladder scare to the seizures starting again. She was the top of my healthcare pyramid. In reading this letter, panic set in. Everything that I worked so hard to put together came to a screeching halt. We sometimes get so attached to things that work for us. But I had to remind myself that everything in life has a cycle. I couldn’t possibly think that Dr. B. would be my physician forever. Can a girl dream tho?

After a six month search for a new doctor, I think I landed another gem. My new doctor had to be able to communicate with my neurologist. This would allow them to work together to treat me effectively. I have a list of personal preferences, as well. Dr. L checked all of the boxes. From my first visit with her, she was very personable; her nurse was terrific as well. The appointment started on time, she didn’t rush me, and she LISTENED. I pray this partnership works out.

I hope that everyone would find there own Dr. B or L. Doctors who listen and genuinely shows interest in their patients. Sadly, we will run into physicians like Dr. S. Doctors who refuse to listen to us. The patients are the ones living with their conditions day by day. The only way they can treat you is if you speak up for yourself. Make sure you feel like a partner in your care and not just a patient.

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With Love,


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