Living a Meaningful Life Beyond Challenges as a Young Person With Chronic Illness
I am 16 years old and a junior in high school. I am also, like millions of other people living on this planet, sick.
Like “20 pills a day, monthly lab work, and lots of appointments” sick.
I developed multiple chronic neurological illnesses when I was in eighth grade. I live with autoimmune encephalitis, dysautonomia, Lyme, and functional neurological disorder. I was only 13 years old when I was forced to face the fragility of my own life. My health had declined so much that I was pulled out of school for months and had to give up my typical teen life that revolved around sports, friends, and school. Now, my life is centered around my health. My body most certainly has the final say in everything.
I want you all to know that this isn’t a sob story. I’m not here to make you feel bad for the poor sick kid. In fact, I hope to accomplish quite the opposite. I want to share a story about finding joy and beauty in places where others see pain and suffering. I am sick, yes. But I am so much more.
My life is wonderful, not in spite of this illness, but because of it.
When you’re sick, people will often tell you how sorry they are that you have to live this kind of life. Although my life may be different from their own, it is anything but miserable.
Oftentimes, trying to convince someone that your life isn’t full of sorrow because of your illness is a wasted effort. I still wonder why they could never see my life the way I did: as a blank canvas waiting to be turned into something beautiful.
Of course, when you live with a complicated illness, hospitals and doctors’ offices become familiar spaces. Hospital life, like all of life, is filled with both joy and pain in equal measures. There are so many moments shared between loved ones and so much life that has been lived in these rooms — from late-night horror movie marathons to room service orders at 6 a.m. to being woken up in the middle of the night for vitals and IVs.
There were moments of total contentment, getting to see the city lights from my room and sunrises that wash everything in a warm glow. Like all teenagers, I’ve had the lonely nights, the sleepless nights, and the stay-up-late-finishing-homework nights.
Sure, there were endless tests and procedures; doctors always finding something else that was wrong with my body. But there was also laughter, those moments when we could see how wrong the world had been: A life full of sickness and suffering can be as rich as a healthy one.
Something that always surprises people to hear is that my health has very little to do with my happiness. Yeah, being sick can suck (big time), but nothing is one-sided. There is beauty among the pain.
When I was just shy of my 15th birthday, I started an organization to support families like mine who are affected by chronic illnesses, called Abby’s Hope Project. What started out as a side project turned into a passion for empowering and supporting both individuals and families who are facing health challenges.
Some things in life are ours to choose, while other things choose us. I never chose to live this bizarre life with this illness, and I didn’t come out of a time filled with sickness and suffering to find my purpose. Yet that seems to be exactly what happened.
And, of course, I wouldn’t want it any other way.