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5 Truths I Wish I Could Tell My Loved Ones About My Seizure Disorder

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I have an undiagnosed seizure disorder (for nearly 12 years) and chronic pain (four years). Unfortunately these go hand in hand for me, and one always has an effect on the other. I have always had a lighthearted approach to my seizures, reasoning that I “have to laugh or I would cry,” which is what comforts me when I’m going through a bad spell.

Along the way I’ve lost friends and even family simply because they don’t understand or they weren’t interested when I had nothing to offer them. There are many, many things I wish I could tell my friends about my life, but when you’re chronically ill you may be swamped by the feeling that you are “a burden.” This prevents a lot of people with chronic illnesses from being honest and open about their lives, thus putting even more strain on mental health (which is a part of chronic illness).

Other relevant stories:
Epilepsy Awareness Month
What Does a Seizure Feel Like
Epilepsy Life Expectancy

1. I don’t want to cancel.

When I have to cancel plans because I’ve had a seizure or my pain is bad, trust me when I say it’s the last thing I want to do. I want to see my friends, do fun things, meet up as a group and hangout, but sometimes I’m just physically unable to. Sometimes I don’t want to ruin it for everyone, so I decide not to go in case I have a seizure. Sometimes I’ve split my lip open or given myself a black eye and just don’t want anyone to see it. So instead of being with my friends – having fun – I sit at home resting, missing out and feeling like a bad friend. Try and be kind if your friend is cancelling due to bad health. They already feel rubbish about it, and they’re the one missing out.

2. It’s real to me.

When I’m going through a rough patch with my seizures, it becomes easy to hear the words “I’ve had another seizure” and be used to it. It’s easy to think “she has them all the time so they can’t affect her that much.” It’s easy to become desensitized to it because you hear it so often. But for me, each and every seizure is real. Every seizure is pain. Every seizure is extreme fatigue. Every seizure is humiliating, embarrassing, frustrating. So while “I’ve had a seizure” becomes a phrase you hear all the time, please don’t dismiss it as “normal.” It’s still very real to me.

3. I don’t speak about my illnesses for sympathy.

Invisible illnesses need more awareness. It’s a simple as that. The stigmas attached to invisible illness need to go, and the best way to do that is to bring the issues to your friends and family in the hope that they too will pass on the knowledge and information. So while it could be easy to think “here we go again” when I share another article about chronic illness/seizure conditions, I’m doing it to raise awareness – not for sympathy.

4. Don’t feel sorry for me.

Now don’t get me wrong. I have days where I feel very sorry for myself. Days where I’ve had multiple fits as a result of excruciating pain and I’ve sat and thought, “Why me?” But I’m so blessed in so many other ways that I just can’t feel sorry for myself for too long. So don’t feel bad for me. Just love me regardless and help me make light of it!

5. I appreciate you.

Throughout my journey with chronic illness, there have been a few fair-weather friends. Friends who are there when you’re useful, when you can offer something. Unfortunately, I’ve been in situations where I became too ill to offer anything but my time and friendship anymore, and these people disappeared. However. All this does is make me truly appreciate those who do go through this with me. I am blessed with the most caring, understanding, loyal, protective and kind friends, who have been through hell and back with me and are still there holding my hand through it, wanting to kick chronic illness’ butt as much as I do (if not more). I’m blessed with a handsome husband who puts me first in every situation without fail. I appreciate you all more than you know.

To my fellow invisible illness warriors and spoonies: I understand. Life can be beyond difficult when you have such huge obstacles to overcome every single day. Not everyone is going to be able to put themselves into your shoes. Not everyone is going to understand the struggles you have to go through. But the people who do are so important, and they want to help you. You are strong, and you have so many people who love and care for you. Fight it for them – you’ll come to know who’s worth fighting for – and fight for you. You deserve the life you set out for before your world was turned around with chronic illness so do your best to climb those obstacles and get it.

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Thinkstock photo by lightkitegirl

Originally published: December 24, 2016
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