MCSMN Blog

September 6, 2019

Finding Gems in the Rubble – Experts by Experience

By Tiffany Kairos

It was two weeks before Christmas and just days before both our birthdays. We had been married only four months, and it would be our very first birthday and holiday celebration together. I had been thinking about my life as a wife – married life – with children, a yard, flower beds, maybe even a vegetable garden!

All of that changed on December 11, 2008. I was driving to the store to pick out birthday and Christmas presents, when I had a grand mal seizure. Lying in the emergency room, I learned that I had crashed into a tree when I had the seizure. Days later, I was diagnosed with epilepsy – I was 22 years old.

Understanding and accepting the unpredictable

It can be tough to understand a condition that is unpredictable, and sometimes, uncontrollable. Medication is an excellent deterrent, but there are days when the seizures find a way around it. I’ve had several medication adjustments and switches in order to try and find the right combination to tame my seizures. This is known as the “honeymoon phase” – a phase when one can get away with having no seizures for a period of time. Soon enough, however, we have to go back to the drawing board of medications and combinations. I’ve come to accept this reality, brace myself for whatever may come, and be thankful for another day.

The doctor-patient relationship – a keystone of care

A healthy and productive relationship between doctor and patient is invaluable – I was fortunate to have great medical care. I found it exceptionally refreshing to have a doctor with such a determination to help stop my seizures, who paid great attention to my questions and concerns, who went beyond our allotted appointment times to make sure that any unaddressed issues were met. Sure, he didn’t always say what I wanted to hear, but he gave me honest opinions and straightforward recommendations. For me, he was more than just my doctor – he was my advocate.

Family – growing closer together

I didn't always have the greatest relationship with my family, rarely keeping in contact with one another. Following my diagnosis, I began to notice that we were drawing closer to one another, keeping in touch with one another regularly, be it phone calls, texts, or even the occasional visit. Today, I find myself blessed by an incredible spouse who gifted me his love, wisdom, an ear to listen, and a shoulder to cry on...and with a family who stood by our side every step along the journey. I see this as one of the biggest blessings to come out of the diagnosis.

Being part of a community

I am one of 3.4 million people in the U.S. living with epilepsy. Living with a chronic illness can make you feel detached and isolated. Throughout the testing, the seizure streaks, the recovery periods, I would have candid conversations with friends within the epilepsy community. The community became my extended family – reaching out during rough patches, providing me with opportunities to lend a helping hand to others. Now, when speaking with people in the epilepsy community, I drive home the point that epilepsy may be in my life, but it doesn't own my life.

A blessing in disguise

As I continue to journey through life with epilepsy, I realize that although I never expected this condition to come into my life, I am thankful for the opportunities that I have been given – to grow as an advocate, to find a way forward to seizure freedom, and to create positive changes in the lives of others who are also on this journey.

Finding gems in the rubble. That's how I see it.

Experts by Experience is a collaboration between  Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author: Tiffany Kairos is an epilepsy survivor, blogger, advocate and founder of The Epilepsy Network (TEN) Organization, an online community, devoted to providing better epilepsy awareness and education, and offering inspiration to all those affected by epilepsy. You can find her on Twitter at @TiffanyKairos

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Tags: #ExpertsbyExperience, Experts by Experience

Although I had treated first time seizures quite a few times, it wasn’t until I went to an Epilepsy non-profit event and heard from patients like you what it really meant to have a diagnosis of epilepsy. People are not their diagnosis ( “ an obese patient, an epileptic patient,…) rather they are people with something ( a person with obesity, with epilepsy, etc) – something retrospectively I wish I had learned in medical school – and I went to a really good medical school.

Anyway, thanks for sharing. I hope everyone understands what strength of character and discipline it takes to deal with the unpredictable nature of this disease.

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