5 Surprising Things My Chronic Illness Has Taught Me
“Maybe it’s time to trade your board back in for skis,” my aunt shouted from the top of the ski mountain as I just tumbled down the mountain for the 20th time that day. I had fallen down the mountain more than actually snowboarded down it trying to learn.
From that moment on, I was determined to learn to snowboard. After nearly breaking my arm, permanently injuring my tailbone and countless bruises, I finally learned to carve (AKA, get down the mountain “normally”). It took me three years.
When someone has told me, “you cannot do that,” I’ve always been the one to push and push until I proved them wrong. I can do what I set my mind to.
Then came 2016, my body was diagnosed with two autoimmune diseases, my days of working as a wedding photographer, dancer, adventuring snowboarding and rock climbing were over. I was devastated to say the least and unsure of how to be “me” again.
While I threw myself many pity parties, being chronically ill has taught me so much I’m forever thankful for. But don’t get me wrong here, I would never have asked for these illnesses and certainly wish I could have learned these lessons an “easier” way. But for now, I’ll stand by my story and embrace the goodness it’s held and taught me along the way.
1. Actually listening to my body.
After a year trying medications for my illnesses with no symptom relief and only additional worsening symptoms, I decided to find alternative treatments. But with postural orthostatic tachycardia syndrome (POTS) especially, this meant I had to absolutely learn to listen to my body. I couldn’t get behind a steering wheel if I was the least bit symptomatic, let alone carry my own daughter. The danger of passing out during any of these activities was too risky to chance trying if I felt the least bit uneasy.
While I sought out alternative treatments for two years, I did finally find dietary supplements that to this day help me manage my symptoms. But I only found them after digging deep to listen to every part of my body. That was something I had reluctantly ignored, and I’d even go as far to say I abused before. I grew up with the mindset this body was just a shell we lived in.
Being chronically ill has taught me every ache, every tight throat, every sigh is my body’s voice. One I had never learned to listen to before, but one I’m so thankful to know and still learning to know more each day. Its voice has taught me so much and I’m excited to listen and learn more every day.
2. Empathy over fixing.
Feeling down? No problem, here’s a silly joke to cheer you up. Have a headache, I’ll get you a wet rag and some medication for that. OK? You good here?
This was me before being sick. And well, let’s be honest, I am still learning to grow out of this way of life. I’m a fixer. I’m particularly gifted at problem solving, always have been. That’s probably why I was such a good rock climber and why I love running my two photography businesses (Celebrate Again and Searching for the Light Photography).
When it comes to empathy, though, I was always known as the one giving quick answers because emotions, frankly, made me uncomfortable. To be honest, though, doesn’t it make most of us uncomfortable?
As you could have guessed it, I’m not naturally empathetic, but I had to find some kindness toward myself in what I was going through getting sick. I had to learn empathy. Learn to sit in the hard emotions without trying to fix them. Learn to offer kindness instead of solutions.
I’d like to announce I’m a recovering emotional fixer, but I know I still have miles to go in learning to be a better empathizer. I’m proud to say emotions don’t scare me anymore because of having to face mine head-on with my illnesses. In fact, I’ll be the first one to advocate for you to sit down and let them flow in and safely out. Cheers to no more emotionally stuffing, but emotionally expressing, safely.
3. Being kind to myself.
A batch of freshly baked cookies used to last a day or two in my household of two people with primarily one of them… uh, me, eating them. After the guilt of stuffing my emotions down with a dozen cookies, I would then hop on my bike or hit up the rock climbing gym to burn off those excess calories. I abused my body, my emotions and ignored both. I never knew how to be kind to myself.
After getting sick, I couldn’t rock climb anymore. I couldn’t ride a bike safely. I certainly could not eat a batch of gluten-filled cookies without setting my arthritis into an excruciating, debilitating fit.
I had to learn to deal with my emotions and be kind to myself. I had to learn to adapt. Both of these I’m beyond thankful to have learned because of my chronic illnesses, though I long for and strive for complete healing.
4. The beauty and richness of a deep breath.
I never imagined at age 27 I would spend full days in bed because I was too sick to even walk to the bathroom alone. The only thing I could safely do was breathe.
It was in these desperate moments I learned the power of meditation and breathing deep. The beauty and richness a deep breath holds is so beautiful and healing for my body and soul. That fullness in your belly from being alive and the exhalation of adding life back into life, resting in coexistence with humanity.
This breath is a gift I’ll never take for granted again. So, if all I can do is take a deep breath I know I’m still alive, and isn’t that just amazing?
5. Shortness of life.
When your life gets turned upside down at such a young age, you learn to see everything differently. Opportunities to fight for your best life become a priority and things that don’t matter as much fade away.
Even though it’s always risky for me to travel, my husband and I had an opportunity last fall to visit Ireland for our 10 year anniversary, a place I’ve always wanted to go. Within two weeks, we packed our bags and had an amazing trip. Traveling is still consequential and I cannot adventure as I would like in new countries, but still being able to go is such a gift.
The same is true as I began to pursue a new photography business idea to help couples celebrate their anniversaries while giving back to couples who face adversity, like battling chronic illnesses. Despite battling severe brain fog and being unable to photograph for long periods of time, making it harder as a photographer to make a real income, I’ve learned to adapt, embrace my life now and live it to the fullest, no matter what each day may bring.
While I’d never say I’m glad I’m sick, I can proudly say I’m thankful for the beauty of life it’s taught me. I’m glad to befriend my body and emotions, sit in empathy, embrace kindness, take deep breaths of life and live life to my fullest, even if these things seem small to some. We get one life and I want mine to be grand.
Original photo by author