When People Say 'I Wish I Didn't Have to Work. You're So Lucky'


“Wow, I wish I didn’t have to work. You’re so lucky. You must have so much fun.”

I’ve heard these words too many times, and it’s not OK. Usually when people find out that I am not working they either don’t say anything or they respond with something like the statement above. And while not working by choice might be fun, my situation is anything but.

Within the past year, my health started to rapidly decline for seemingly no reason. I was in and out of the ER multiple times and was eventually admitted to the hospital for testing. I was put on short term disability from work at two different times in the past year, and eventually, I had to step down from my position because I could not maintain my responsibilities. Eventually, I was diagnosed with vasovagal syncope and a seizure disorder. To start having seizures for the first time at age 24 and begin passing out multiple time a week was a lot to handle.

I was put on medications to treat both conditions, and both medications have been changed and tweaked a lot. The process has been stressful and sometimes painful. It’s confusing and frustrating. As a 24-year-old, I want to be able to hang out with my friends and enjoy the summer months and begin making a career for myself. What I don’t want is to have to worry about if my friends know what to do if I have a seizure or if I faint, or have to limit my activity choices because of my body’s new limits, or rely on people to drive me places because I’m not safe to drive a vehicle, or be scared to search for a new job because I don’t want to push my body too hard.

No, I do not have a job. That has allowed me to travel a little more this summer with my roommates and it has given me the opportunity to prepare to go back to school in the fall. I am grateful for the time I have had to be away from a job so my body could get used to the right medications and so I could spend so much time with my wonderful family, but it has also created the most stress I have ever experienced in my life. I still have bills to pay and things I am missing out on. So the next time you learn someone in your life isn’t working for one reason or another, think before you speak.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo by Design Pics.

JOIN THE CONVERSATION

Related to Seizure Disorder

drawing of woman's face between green leaves

How Shorts in My 'Emotional Circuit Breaker' Cause Me to Have Seizures

It started with a migraine that wouldn’t go away. A day stretched to a week stretched to months, and still there was head pain, nausea, blurred vision and other symptoms. One day, my entire left side went weak, my arm and leg useless and my speech slurred for a bit before returning to normal. A [...]
woman writing in notebook

Struggling to Tell the Story of My Disease

I don’t know how to write this story. Maybe it starts with the shaking – my legs and arms flailing uncontrollably, my whole body arching and shaking. The hospital report called the shaking “rhythmic movements,” as though I was dancing to music. It came out of nowhere, the shaking, and rapidly grew worse. It looked [...]

How Everything Has Changed Since I Had a Seizure in the Grocery Store

More than three years into my seizure disorder, I didn’t think that much could scare me anymore. I’ve dealt with most things, I thought – a loss of dignity, independence and the life I wanted – so surely not a lot can shake me anymore to do with this illness. I was naïve, so so [...]
Woman with a serious look on her face.

The Insecurities of Living With Psychogenic Non-Epileptic Seizures

Sometimes I can go a month without “one,” but some weeks it’s every other day. When I have these non-epileptic seizures, I am not aware of it, nor do I remember what’s happening around me. I do know when I have one because of how I come out of it. On a positive note, I [...]