4 Things People With Epilepsy Want You To Know

Epilepsy can intrude into anyone’s life, at any time. Millions of men, women and children battle this selfish and rather challenging condition every single day. All of us diagnosed are on the same journey with different stories to tell. Pages continuously being written of our challenges and victories. Our setbacks and comebacks.

There are quite a few issues that come up for women living with epilepsy, just like there are issues that men experience.

I was diagnosed with epilepsy almost a decade ago. Throughout my journey with epilepsy, I found it a bit of a task to find information on a comparison between the issues men and women face living with the condition.

Below are four things I would like you to know:

1. When we say “Everything’s fine.” it doesn’t always mean it’s fine.

In the most simplest of responses, we say that everything’s fine. Family, friends or even acquaintances ask us how we’re doing and we lay down this response. Why do we do this? Because we do what we can to shove down our emotions so that they don’t overflow. Pull down the mask over our face to hide our true feelings.

This may be because we feel as though we don’t want to burden others with our struggles or we want to appear as though we have the strength to endure the challenges in our lives. Truth be told, behind it all, it may not be as simple as portrayed.

Sometimes, it can even be an effort to admit our troubles to anyone…even ourselves. As a result, this only digs a deeper hole of negativity.

It’s worth it to break the chains of “I’m OK” in order to release how we’re really feeling. Whether it be the person that we’re speaking with who takes the extra step or we who decides to let the truth set us free.

2. We might dress up for that special occasion but our self-esteem is wearing sweats.

When I was first diagnosed with epilepsy, I became a slight introvert. Losing interest in going anywhere outside of the home. I avoided mirrors and it was PJ day every day. After a period of time, and with beautiful love and support of family and my spouse, I regained my self-esteem. Reminded that epilepsy doesn’t change the person that I am or turn a person ugly in any way. This isn’t always easy though. This mindset doesn’t happen overnight and it’s not always smooth sailing.

Quite frequently, I remind myself that though epilepsy is in my life, epilepsy has not changed the person that I am in any way. Well… allow me to rephrase that. It has empowered me, sure, but it has not devalued me in any way. This goes for each individual reading this right now. Remind yourself of this as often as you want and need. You are and always will be beautiful inside and out.

3. If you have epilepsy, you can be a spouse too.

Although an epilepsy diagnosis requires us to set aside a few tasks and mind a few activities for the betterment of our health, this does not revoke our role as a loving, caring spouse. We can care for our spouses in many wonderful ways, even so.

I am a stay-at-home wife about to celebrate a decade of marriage. When one partner has epilepsy, it’s not easy for either partner. Open communication and stepping into one anothers’ shoes has been medicinal along the way. Living with epilepsy is not just about caring for ourselves it’s about caring for the one who most cares for us too.

Caring for my spouse though I have epilepsy fills my heart with joy and floods me with self-esteem to know that I can still accomplish certain tasks.

Living with epilepsy doesn’t decrease our worth as a spouse. It increases our ability to become even stronger through the challenge.

4. It’s time to take medication. Please don’t med-shame.

There is a shadow that blankets epilepsy, several other chronic illnesses and those who take medications for their conditions still to this very day. Awareness is needed like a hot flower needs a rain shower.

No one should feel as though they need to run and seclude themselves in order to take their medication(s) to avoid judgmental glares and med-shames. The cell phone alarm goes off and so does the flicker of panic to find a place where no one can see you pour your medication in your hand and down the hatch.

In the beginning of my diagnosis, I did this. Why? For this very reason. I would receive stares and glares from strangers as though questioning “Is she a drug addict?”, “Another druggie popping pills again.”. Now, I can’t read minds, no, but an expression can sometimes say a lot or at least be easily misinterpreted. The eyes have a language all of their own.

After a time, I gave up hiding (come medication-time). I gave up secluding myself. I would not be captured by embarrassment or self-consciousness due to my epilepsy. In addition, if need be, it would make for a great conversation-starter to raise awareness and shatter stigma.

For those of us living with a chronic illness, it’s even tougher because we have a few limitations. It simply takes more energy to walk against the wind.

So when you see someone living with epilepsy or any sort of chronic illness, remember, living life along with these challenges takes a bit more strength, but getting out of bed each morning to take on the day is the strength that counts.

Would you add anything to this list? Share in the comments section 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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    Rhonda G

    I needed to hear #3. Thanks. My husband and I will be celebrating 14 years of marriage this Spring. Sometimes I feel more like a patient than a wife. We need to feel needed and wanted. I would love to be a wife and a mom but as it turns out I am a wife and a patient and that is okay, too.

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