The Mighty Logo

How Chronic Illness Is Like Going Back to Kindergarten

The most helpful emails in health
Browse our free newsletters


Maybe you can remember back that far, maybe you can’t.

On the day I was set to cross the stage after making it through the 12 long years of school, I stood on my front porch holding the same stuffed dog I held in a photo from the first day of kindergarten. The only difference was, I took Fluffy with me on my first day of school – I opted out of carrying him across the stage at high school graduation.

But all those years ago walking into Lincoln Elementary School with my best friend Connor and my safe haven stuffed pup, I was starting a whole new journey.

We quickly learned how to make new friends and how to play nice with others. We learned the alphabet and soon we’d be writing each letter in cursive. I remember having to write out my home phone number and my address. Learning to draw. Learning how to tie my shoes.

After kindergarten, I remember being separated out with a select few. We were taken away from the standard grammar lessons and had a mini book-club with two other girls where we read a bunch of Boxcar Children books. It’s funny, I never actually learned grammar because my reading level was above average.

We lost teeth. We got bad haircuts. We seemed to catch the flu an awful lot. Our social skills were fine-tuned. We became a product of whatever tiny society we were placed in with each differing school and community.

And then we grew up.

We never thought we’d end up right back where we started.

Chronic illness often forces us to completely start from scratch. We have to go all the way back to kindergarten. Hell, we probably have to go back a bit further.

When I was in high school, I had to relearn how to walk. I didn’t think much of it when it happened, but after sustaining a knee injury as a freshman, my physical therapist recognized that I was favoring my injured right knee. I had walked improperly for so long that the muscles naturally formed differently on each side, giving my left leg an appearance of being two entire inches longer.

And so for almost a year, I wore a lift in my shoe to realign my legs, and I spent hours on end relearning how to walk. How to properly step heel to toe, the correct distance my strides should be… it was all quite a mess.

To be honest, I do believe the host of injuries I’ve had throughout my youth point to another condition that underlies the migraines. But until I can get a doctor to fully listen to those concerns, it will remain a simple theory.

Relearning to walk comes before kindergarten, but so many other portions of life have to be relearned as well. Illness has a tendency to isolate us. We may revert back to having contact with mostly family and perhaps a few neighbors. We must be patient when re-entering our lives with our illnesses, especially when it comes to social skills.

I have never been a giant social butterfly, but I always had a wide variety of friends. Some days I played kickball or tag with all the guys on the playground. Other days I’d sit with the girls and we’d sing Cheetah Girl songs. Somewhere along the line, I learned how to interact with other kids.

Overcoming the comfort we find in solitude can be difficult. Chronically ill, disabled, mentally ill, at some point we often find that the isolation we hated or weren’t comfortable with evolved into a solitude we took comfort in — either consciously or subconsciously. At some point we stopped saying yes to plans. Eventually, we stopped being invited. Or maybe we moved around a bit and never had an easy way to connect with people once we weren’t forced to socialize in an academic setting.

So we say yes to plans again. We slowly find who we click with again. We start to understand new social cues.

We also have to learn to play again, and we have to do so without recess, or high school football games or sorority socials.

I’m a huge advocate for learning to find joy in our lives. I think this is where a lot of people get lost in understanding me and my progress because I’ve reached the point where I’m surrounded by things that make me happy and keep me grounded. I prioritize little experiences – like a small vacation, or heading to the beach. Many people have gotten incredibly far in life without ever looking inward to find happiness, so they think those of us who have found it are undeserving for whatever reason.

Plato talks a lot about the idea of play and how it’s lost on adults. But chronic illness often forces us to take this step by step approach and allow play back into our lives before we can venture into the more serious aspects of life. If we cannot play and enjoy our lives for short periods throughout each day, how we move forward and take on larger responsibilities like further education, part-time work, or even a career?

No one expects a 7-year-old to go out and get a job. We shouldn’t expect someone who is sick and striving to heal to do the same either. It’s a process, and if we jump too far ahead too quickly, we’re going to have to start all over again and push even harder.

And so we learn to play.

Maybe at this point we graduate kindergarten, but maybe not. Maybe we still need our daily naps to get through the day. Regardless, we start to progress further. We learn what our limits are. Can I sit on the floor with the other students learning various nouns and verbs and how to conjugate? Am I able to successfully go through a round of flash cards and do addition? Subtraction? Am I stuck on why multiplying something by zero equals zero? Or am I excelling?

Those were the questions teachers asked and took notes on. The answers determined what classes we were placed in the following year, if we were eligible for the advanced math class or not.

We have new questions now.

It takes me roughly an hour to write a blog post, and once I do, that’s typically all I’m able to do in the day. So what happens when I can write a blog post and then sit down and edit 10 pages of my book? What happens when I can put groceries away, write a blog post, cook dinner and clean up the dishes? Maybe while also having cleaned earlier that day?

Will I be able to stand while taking my shower? Will I have to go to bed early because I’ve become so foggy that I can’t focus on a mindless TV show? Will I wake up in excruciating pain because I overdid it? Will I be all right and be able to do the same thing tomorrow? Maybe even so all right that I can do all of it and grab coffee with a friend?

These are markers. Stepping stones. Indicators pointing towards when I can take another college course, or maybe pick up a more extended freelance project. And maybe if a freelance project can be sustained, a part time job could be in the picture.

But we’re not going to get to those big-picture questions and the idea of living life on anything other than a day to day basis if we don’t recognize the need to go back to kindergarten and start all over. As we go back and focus on how we can relearn and what we need to prioritize, it’s important to remember that who we were the first time going through this process isn’t who we are now. And that is OK.

Maybe we aren’t visual learners anymore. I used to be able to watch a football game and know every single player. I knew the names and the number and what role they had. Now I have to sit back and repeat a player’s name over and over again. I have to repeat the number. I have to hope the person broadcasting describes each play really well. I’m no longer able to visually understand and retain the game. I need an auditory aid because of my brain fog and my inability to focus in and literally see the game.

That doesn’t mean I can’t learn and understand the game anymore. I just have to do it differently.

Just like I have to sleep at a different time. Just like having to eat different foods.

This is me starting my new journey.

Some days I’m going to need a nap. Most days I’m going to need to lay down. I have to focus on creating new relationships, understanding what I need out of a friendship and prioritizing my boundaries. I have to learn what is and isn’t appropriate for various social situations and how I can exist and thrive in new spaces I choose to occupy. I have to take tests, physical ones, that demand sometimes more of me than I’m able to handle to find out what stepping stone I’m on. I have to prioritize discernment – what deserves my energy and my time, when I should or shouldn’t take medication or use a therapy, and so on. And I can’t fast forward through it all and put on a graduation cap pretending that’s where I am because that’s where someone else thinks I should be.

This story originally appeared on My Life, My Migraine.

Getty photo by Nilimage.

Originally published: October 30, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home