How Chronic Illness Changed my relationship with time  

When Time Stopped feeling Neutral 

Since being diagnosed with my first chronic illness, time has felt different. There is a real distinction between before and after diagnosis. I can remember sitting in a room waiting for my doctor to show up, on my birthday, thinking about how weird it was that, as a teenager, my time was spent in a hospital. I wish that illness only affected the body, but the truth is, it reshapes everything. When you’re sick, the concept of time warps into something you don’t really have control over, nor can you predict what’s coming next. 

Before: Living by the clock 

Before I had a diagnosis, my life and schedule were packed with things I had to do. From dance, Karate, and school obligations, my time was filled with things that kept me on the move. My family was always on the go, and our schedules were busy. At the time, I measured my worth by how much I got done in a day. Rest was something that I knew I could do someday in the future, and I wasn’t too concerned about it then. 

After: Waiting became a way of life 

After my diagnosis, my days were wildly unpredictable. Sometimes I would be able to go to school and/or a dance class, and sometimes I’d be at home in pain, trying to get myself through a flare. Hanging out with friends and doing other high school things girls my age did was put on a “maybe” basis because I never knew how I was going to feel on any given day. I think this is when my anxiety really started to kick in. Constantly having to recalculate my life and my plans really started to take its toll. 

Waiting became a way of life 

A lot of my time was spent waiting. Waiting for appointments, and waiting fro the energy to appear to do things. I remember feeling so invisible as I waited in those exam rooms. It was an exhausting feeling, like I had to fight for answers constantly. It was also hard because life was moving on without me. My friends were going to parties and experiencing life, while I was stuck getting IV’s and having procedures. Nothing was fair about how time was passing me by.  

Slowing down without consent 

One of the hardest parts of my entire journey has been how much I’ve had to slow down. It wasn’t a decision that I got to make, but instead my body made it for me. To this day, it can be difficult for me to choose to listen to my body; my instinct is still to fight against it. The tension is real! I get so emotional when I’m forced to be still in a world that I feel like is moving at light speed. I grieve the plans I had for my life and the lost momentum I’ve experienced. 

Time feels different now 

Having a baby completely changed everything for me. When he came into the world, I had to start looking at how I value my time. I knew that with my illness, small moments spent with him would carry a larger weight. I knew that there might be activities and important milestones that could possibly be missed due to my illness. Therefore, I needed to focus more on the quality of time spent with him. I’ve been blessed that I haven’t had to miss too much while he’s been growing up, but there have been many times when I couldn’t do the fun activities he’s wanted to do. In those moments, I’ve tried to focus on teaching him how to be flexible, how to have empathy, and also remind myself that I’m not a failure because I can’t play in a certain way. 

Letting go of Linear Progress 

I know that healing and growth hardly ever occur in a straight line; good weeks filled with happiness and then setbacks will occur. I’m in the process of learning how to measure my life by new metrics, and I’m no longer measuring by a timeline that I made out of thin air. I’m also learning how to not put so much pressure on myself to be where my friends and loved ones are in their lives. I have to live MY life in my own way. 

What I’m still learning about time. 

So far, I’m learning to not to force myself into the next stage of life because society told me I should be. I can take my time. I’m learning that waiting for something and/or resting does not equate to failure and that I can’t “conquer” time.  

Living in the in-between 

Long-term illness causes you to feel like you are living your life between moments. Between energy bursts and exhaustion, between hope and grief, etc. I keep reminding myself to stay present during these hard moments and that I’m not behind but instead, I’m right where I’m supposed to be.