Crohn’s disease can develop at any time in your life, but adolescence is one of the times the disease is more commonly diagnosed. Health’s Crohn’s Disease Advocate Gaylyn Henderson, MPH, was diagnosed with Crohn’s as an adolescent. She explains how the diagnosis impacted her then and how living with a chronic illness starting as a teenager has affected her through adulthood.
I’ve often heard people say their illness doesn’t define them.
But for me and my experience, my chronic illness has absolutely shaped and defined me as a person.
My chronic illness has influenced my life in ways that are both conscious and subconscious. My chronic illness has molded and shaped the person I am today.
And I’d like to think I am all the better for it.
I was only 14 years old when I was diagnosed with an autoimmune chronic illness called Crohn’s disease. Crohn’s disease is an inflammatory bowel disease that causes inflammation in the digestive tract. It can lead to severe pain, weight loss, and other debilitating and painful symptoms.
Because I was diagnosed at such a young age, there is no doubt my illness has influenced my life, my choices, and my every being. Throughout my disease journey and throughout my experiences growing up with Crohn’s disease, my illness has changed, shifted, and altered my life in ways that I could not foresee.
So yes, my illness defines me. But I’d like to think that I have control over the definition.
I was diagnosed when I was a freshman in high school. My enthusiasm and excitement to begin this new chapter of my life quickly changed into unpredictable fear. At a time when your body is transitioning and undergoing physical, emotional, and cognitive changes, my body started to turn on me and changed my life forever.
Like my peers, I was incredibly excited to begin high school. Unlike my peers, my life went in an entirely different direction not long into the new year. Learning to cope with a chronic illness as a teenager and striving to be a kid while being thrust into real-life circumstances that many—even in adulthood—will not go through has its unique challenges.
When I was a teenager, I recall the feeling of not being able to fully relate to my peers. I was a cheerleader, on the dance team, crowned Miss Evans High School, and participated in extracurricular activities (when able), but there was always that little piece of me that felt different. My thoughts and concerns on a daily basis were not the same as my peers’. And to be completely honest, at times, I still feel that way.
Your life trajectory instantly changes the moment you are diagnosed with a chronic illness. You are forced into a life that you may not have envisioned for yourself. You are grieving the health you envisioned for your life and realizing how the unimaginable toll of not having health impacts everything.
One experience I had when I was 15 stands out. It relates to body image and illness. After returning to school after being home-bound for quite some time due to hospitalizations and surgeries, my teachers and peers did not recognize me. The medications I was on and the effect of illness had taken its toll on my body—so much so that I was unrecognizable to friends and even family.
Becoming physically unrecognizable due to illness impacted my self-esteem drastically. I don’t have many pictures from this time of my life because I didn’t like how I viewed myself. Body image and self-esteem can be significantly impacted due to the stigma of living with a chronic illness.
Over the course of my life, I’ve had several surgeries, procedures, and hospitalizations with the overall goal of restoring my health and quality of life. But with each surgery, each procedure, each hospitalization, a little bit of the life you envisioned for yourself starts to appear more unattainable. Grieving the life you thought you would have can be devastating. It’s a process. And it’s normal. And it is necessary.
Chronic illness is like a thief in the night. It might not only creep in each time; sometimes it busts the door wide open and every single time takes a little bit more from you and there is nothing you can do. But the thing is you know the thief is coming so you try to stay vigilant and still wrestle with it every night. You refuse to let them leave with anything before you take back what they managed to take a few nights ago.
Chronic illness is a constant struggle of give and take.
When I was 16 years old, my journey was highlighted in a book entitled, “Hand to Hand, Voice to Voice, Young Journeys of Courage.” Here is a poem I wrote through sharing my experience at that time:
They Told Her
They told her she wasn’t alone.
That she was not by herself.
The hurt and misery she must condone.
For it will coincide itself.
She would cry herself to sleep at night.
Sometimes hoping she was never awake.
Not knowing that it would be alright.
She would ask the Lord her soul to take.
One day she will look back
On the hurt, pain and fear.
One day she will look back
And know that her God was near.
She will never know why this lasted so long
But she always knew she must remain strong.
For me, chronic illness has been a difficult and painful fight. Yet it’s been an incredibly enlightening journey too. Even at 16 years old, just beginning my chronic illness journey, I recognized the resilience and strength I would need to survive this illness. I recognized how difficult living with Crohn’s disease may be. I knew I would need exceptional fortitude to survive this journey.
Years later, I am still surviving, thriving, and living life on my own terms (as much as my illness will allow).
I now realize maybe it’s not so much that my illness defines me—maybe I define my illness. At times, I have the ability to think of my disease not as something that happened to me. I try to focus on the strength and power I’ve shown in experiencing those challenges and still being able to keep going.
In difficult moments, I use my experiences—both good and bad—to reflect on and build upon the tools and skillsets I need throughout my life to overcome. I recognize the power that it takes to consistently and unrelentingly pull myself up from the bottom of grief and what can feel like despair.
Anyone living with a chronic illness who still gets up every day, again and again, and tries their best defines strength.
Anyone who defies the odds and accomplishes what they set out to do with modifications or adjustments defines capability.
Anyone who pushes through chronic pain on a daily basis defines perseverance.
Anyone who continues to survive against the odds, no matter the hand they have been dealt with defines resilience.
When I look back over my life, I like to be defined as someone who has persevered through the unthinkable, someone who has persisted through the unrelenting, and someone who has survived the unimaginable.
From being diagnosed as a teenager until present day, living with Crohn’s disease defines me, my story.
Crohn’s disease has put me through adversity and has defined me, but it is a definition of hope, resilience, perseverance, strength, and determination.
And I’d like to think that I am all the better for it.