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Awareness,  Epilepsy

What NOT To Do When Living With Epilepsy

Living with epilepsy, I often reflect on new and different ways to embrace the reality of my condition. Over the course of a decade, I’ve pursued and pocketed different suggestions for what to do, whether it be a new medication or treatment option, but it’s equally as important to focus on what not to do.

Understanding common behaviors and habits that interfere with coping was something that interested me. I learned that I was not alone along my journey. That other people had similar experiences. I learned that the obstacles that I had been entangled with were quite common.

These behaviors and habits can be unhealthy and some even dangerous in our mission to rise above epilepsy. By increasing our awareness, getting comfortable being uncomfortable and embracing who we are, we will begin to heal and grow much stronger.

Below are seven behaviors and habits to avoid:

Don’t Doubt – Yes, epilepsy does come with some limitations. Some that we are given the choice to set aside, some that are out of our hands. These for the betterment of our health. To help us avoid seizure activity or worsening our condition. Even so, we should never look upon these limitations and doubt who we are and what we CAN do. Just because epilepsy enters our lives doesn’t mean that a happy, healthy and fulfilling life is impossible.

Don’t Hide Your Story – Everyone has a story. A history. A series of failures, mistakes, milestones, challenges, all of which have shaped them into the person that they are today. We can inspire others. We can educate others. We can fill ourselves and others with solace and hope.

Don’t Act Reckless – Anger, frustration, sadness, all of these feelings are normal in a life with epilepsy, but we shouldn’t let them dictate how we conduct our lives or the decisions that we make. Though we live with a condition that we did not ask for, it’s important to live responsibly and not impulsively or ignore our safety.

Don’t Live Uninformed – Knowledge is power. We know that saying well, right? How true it is. In order to stay on top of our condition, to fight back, it’s important that we listen to our health care physicians assessments and educate ourselves about epilepsy so that we can effectively understand how to avoid seizure activity, worsening our condition and express our treatment/medication options with our physician.

Don’t Live in Denial – In the beginning of my diagnosis, I stubbornly refused to accept my diagnosis of epilepsy even though I had to take handfuls of medication and experienced several seizures a day. This denial also included refusal to ask for help when it was clear that I was going to need it.

When we’re diagnosed with epilepsy, sometimes we might just want to act as though nothing is wrong. We might not feel up to talking about our condition. Denial is a way of coping and when we’re diagnosed with epilepsy, for some of us, it gives us time to adapt to the situation. To come to terms with it. Though understandable for a short period of time, we don’t want to live there long-term. It can stand in the way of treatment or well-being. When we choose to conquer denial and accept that we have epilepsy, we can say in confidence that epilepsy does not have us.

Don’t Be Dismissive – It can be a struggle when family and friends want to offer their help or input. We might find ourselves thinking “They aren’t walking in my shoes. Who are they to think they know better than me?” No, those closest to us aren’t walking in our shoes but they are walking beside us along our journey. For example, my spouse has a keen eye for when I’m about to have a seizure or reminding me to take my medicine. It’s important not to refuse or dismiss their efforts to help us because they do have our best interest at heart.

Don’t Be Ambivalent – Following an epilepsy diagnosis, it’s easy to be on the fence in regards to treatment options. Especially when still in the midst of coping with the deliverance of the news. When we’re tangled up in different emotions, we find ourselves at a standstill, not fixing our eyes ahead. Releasing our grip on ambivalence allows us to explore treatment options with our physician in order to be more effective and make things better.

What do you avoid when living with epilepsy? Share in the comment box below!

Tiffany Kairos

I am a happily-ever-after wife, an epilepsy diagnosee, advocate for epilepsy awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!


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      This is absolutely me 100%. I have learned to conquer my fears. I mostly avoid lack of enough sleep and wandering thoughts . You are doing a great job!

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    Flower Roberts

    These are excellent tips for epilepsy patients. The “Don’t Hide Your Story” is very important for safety reasons, but also alleviates fear of being “exposed.” I am glad we never worried about that with Rose.

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    Jason Hughes

    Absolutely Awesomeness Excellent post, your so so right about inspiring people on with their Epilepsy Stories, That’s what you have Done for me & so many others, Thankyou so much Tiffany Kairos.

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