Epilepsy

When They Say “I Don’t Know How You Do It” Living with Epilepsy

Living with epilepsy is not a walk in the park. It’s a daily challenge. Not only physically, but emotionally and spiritually. The condition stretches you to your breaking point, like a rubber band creaking in readiness to snap. Those who don’t have the condition, friends, family members, aquaintences, even the public cannot know what it is like to contend with the condition unless they themselves had it. Those closest to us, sure, empathetically they can understand but the gravity of reality is heavy to those diagnosed.

Many-a-times, I’ve been approached with the statement of “I don’t know how you do it.” and in response, I can’t help but slightly grin and chuckle inside. There are times where I myself don’t even know how I do it. Taking on epilepsy and getting through the day in one piece. Sanity in tact. Journeying on a decade now, I’d say I’ve withstood this condition like a rock in mid-ocean.

Navigating this challenging situation in my life, it has been these five things that have helped me:

Positive self-talk

Practice positive self-talk. This can allow you to discover optimism, hope, and joy within the difficult challenges that we face living with this condition.

Love and words of affirmation from my spouse and family

Hearing kind, encouraging, and positive words are truly medicinal along the journey. They are logs to add to the fire in the soul

Reach out to others affected by epilepsy

Once diagnosed, it is not a lonely road. There are many who are affected by the very same condition. It’s important to keep at the forefront of your mind that you are not alone, and to help others know that they themselves are not alone. Gain knowledge of the condition you live with from fellow journeyers. Share what you’ve learned with others. Build friendships and connect with epilepsy groups.

“Practice being selfless. You end up getting more than you anticipate when your soul is giving.” – Anonymous

Talk about your journey

Speak with those who too have been affected by epilepsy; family, friends, etc. Create a blog, or create videos speaking about your experience to encourage, motivate and/or inspire others. Don’t allow fear, guilt or shame to shove your self-esteem and courage down deep within you. Remember. Epilepsy does not own you.

Laughter

Epilepsy has an agenda. To rob you of your joy. Always remember, as best as possible, to send negative emotions (Sadness. Anger. Frustration.) sailing away. Sure, epilepsy unexpectedly, unapologetically made its way into your life, but don’t allow it to be a storm cloud hanging over your head day and night. We were born with the gift of laughter. Laughter is a natural medicine. So give yourself permission to smile and to laugh because regardless, life is still good.

I’d love to hear from you! In the comments section, what has helped you navigate the challenges of epilepsy?

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!

One Comment

  • Robert Poloha

    Wanting to give up, feeling so misunderstood and by myself, sometimes being so frustrated with all the uncertainties – not one day is ever the same – never knowing what is going to happen next. Being so misunderstood by carers out to look after me who are there to make their money, and agencies more concerned about how they stand than how they look after their patients. And then realising that I have God’s Spirit with me holding me and saying to me – “I am by your side, with you, holding you when you can’t stand! Hold on to me – don’t give up!”

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