7 Life Lessons My Juvenile Idiopathic Arthritis Taught Me About Myself
I remember when my mom took me to my first Juvenile Arthritis Conference. I was surrounded by kids like me — only many were in wheelchairs or had walkers and crutches so they could move.
That was the day I realized I was one of the “invisible” ones. My pain was all internal. I looked like a typical elementary schooler, but my joints felt like I was a senior citizen most days. People expected me to run, skip, and play just like other kids, only when I did that I usually ended up falling and breaking a bone or two.
Having an invisible illness makes you question your mind somedays. You look “normal” from the outside, and if your pain is well-managed many days you may feel “normal” inside too.
But then the you get the reminder that your body is actually waging a war against you.
For me those days creep in when I forget I’m due for my medicine and my jaw aches so badly I can barely chew. Or on the mornings I decide I’m ready to hop on the treadmill for a jog but my knee pops two minutes into my warm up and I can’t continue, or the first chill of the winter that paralyzes my joints and makes me want to snuggle in bed all day.
There’s the constant worry every time I have to inject my body with what I somedays assume is poison and other days realize must be magic because it’s the medication that allows me to live pain-free.
I’ve ended up in the ER more times than I’d like to admit, feeling like a hypochondriac every time because on the outside I look fine — but the aches, pains, bumps, and bruises on my body tell me otherwise, raising questions as to my overall health and well-being.
I was diagnosed with juvenile idiopathic arthritis at age 5.
I’ve lived through the questioning stares when my mom pushed me around the mall in a stroller at age 7, when I was quarantined to the hallway with a physical therapist to do modified stretching in gym class at age 12, or when I choose a handicapped space at an amusement park as an adult because I’m not sure what my energy level will be at the end of the day and if I’ll be able to walk easily back to the car.
Having an “invisible” chronic Illness has affected every part of my worth as a human.
But it’s also shaped my identity in many positive ways too.
It’s cultivated a spirit of creativity and artistic expression in my life, it’s been the ultimate teacher of empathy and understanding, and it’s taught me to be persistent and resilient when it comes to setting goals and dreams.
Here are seven lessons my invisible illness has taught me when it comes to living a fulfilled and purposeful life:
I’ve had to advocate for myself from a young age. From explaining how I feel to doctors, to letting teachers know when I’m in pain, to saying “no” to activities when I know they will have an impact on my body — I’ve had to maintain a spirit of autonomy around my body and my physical experiences throughout my life.
Not in the physical sense, in the kind that builds character. I’ve had to stand proud in my personal shortcomings and limitations from a young age. I always knew I wasn’t “normal” and couldn’t do all the things most kids my age could do. My illness taught me resilience in the face of difference.
Physical limitations growing up meant that certain skills and tasks never came easily. If I wanted to do something, I had to work for it — and some days that was as simple as getting out of bed and making it down a flight of stairs in the morning. Persevering in the face of obstacles has since served me well in so many other areas of life too.
When our bodies fail us, time and time again we start to lose faith in ourselves and our abilities as a whole. On the bad days when I can barely get out of bed, I’ve had to learn to think in the positive and trust the journey. I’ve had to trust that my body will heal itself the best it can and that the bad days are temporary.
There’s been a lot I’ve had to say no to while growing up — playing sports being a big one. Knowing yourself and your body enough to say no, especially when it isolates you from the norm, can be a challenge and can take incredible resilience.
Having an invisible illness has taught me compassion. It’s made me curious and willing to listen and hear people’s stories. Everyone has a story. Everyone has their own pains and struggles. I know nothing is as it seems on the outside, and I live my life encouraging others to share their pain in the spirit of seeing that we’re more alike than different in our humanity.
Since my illness was mainly physical, I gravitated to the arts growing up. I journaled, painted, sang, acted, photographed. Living a life of creativity has stuck with me and supported me throughout my life — I’ve even built a career around teaching other women to anchor into their own creative revival as an adult.
Beryl Young was diagnosed with juvenile idiopathic arthritis at age 5 and is the founder of Recapture Self, a community for moms who are ready to reclaim their identity beyond parent – using creativity as a guide. After the tragic loss of her first daughter at 20 weeks pregnant Beryl picked up a camera as a source of healing, hope, and self-discovery. She’s since transitioned her career from showing elementary school kids and teachers how to using technology creatively in the classroom to inspiring moms to lean in to their creativity to live a more intentional, present, and connected life. Learn how to recapture your time and your creativity over on her website here.
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