The Mighty Logo

My Chronic Illness Was Hardly a Teacher While I Was Growing Up

The most helpful emails in health
Browse our free newsletters

I’ve began to sense an uncomfortable pattern as a frequent consumer of media focused on chronic illness and disability. The internet — being the open forum it is — provides stories of illnesses being sources of teachable moments and life lessons (an especially common thread discovered when scrolling through Facebook groups for parents of chronically ill children).

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I’m here to say, in my humble opinion, that my illness has hardly been a teacher.

My illness did not teach me to be strong.

It forced me to. You cannot teach a child to simply accept living in pain, to ingest incredible amounts of medication and to understand their body has betrayed them. I have heard countless times the reassurances of how strong I must be to have made it through what I have, but what was my alternative? Lying in wait for the pain to stop for a relief that would never come?

I became strong because there was no other option. I became strong because becoming weak meant becoming a shell of myself. My illness was not the hurdle I crossed, but the chain holding me at the starting line. I learned to be strong from my weakest moments, from hours of crying and moping and feeling absolutely miserable. Of course, there were good days. There are always good days that make me wonder if the bad days were even all that bad. And that’s when I realize I’m searching for anything resembling light in the tunnel disease I was dropped in. I became strong all by myself, in the sad in between moments of all of those good days.

My illness did not teach me how to be kind.

I have been downright cruel to people who were unfortunate enough to catch me in the middle of a flare, or a migraine, or even just on a day where I felt too close to tears for comfort. I have cursed doctors who dismissed me and the friends who abandoned me after my diagnosis. My own family has been on the receiving end of my fire endlessly throughout my illness.

All of my life I saw patients with chronic illnesses portrayed as collected, worldly beings that existed to impart knowledge and be endless sources of kindness. What I wasn’t prepared for when I was diagnosed was my anger. I couldn’t imagine reacting calmly in the face of the shift my life was facing. But, thankfully, my family didn’t put up with this for too long. I was seated in the living room and given the “we know you’re going through it, but you suck” talk within months. I saw that my own suffering didn’t excuse that of others. I still stand up for myself, but make some attempt to allow room for accidents. Teaching myself to recognize others only know what I tell them was eye-opening. Kindness became a muscle I exercised carefully.

My illness did not teach me how to be brave.

I wrote not one, but several essays on my fear of needles. Until I was in high school the news of an unexpected shot could ruin an entire day and ER visits would send me into hysterics. Having been raised to fear both God and my mother, rather than causing a scene in public, I figured out my system for keeping the fear held somewhere high and tight inside of me within a year of regular doctor’s visits. So long as I bit my cheek, or did times tables, or pushed as hard as I could for my mind to switch off directly, I could get through appointments without crying. When I was told I would need brain surgery, it was my mother who sobbed in front of the neurosurgeon while I stoically took notes. I couldn’t cry for the life of me. It was in that moment, and the 50 long days that followed, where I realized maybe I wasn’t brave at all or maybe being brave wasn’t what I needed at the time.

My illness did not teach me how to let go.

I have repeatedly mourned many aspects of my life since my diagnosis and the process has never once been easy. I guess in a way feeling like you’ve “missed” some part of your life never is. For years I resented myself and my illness for the pain I suffered and for the experiences I either didn’t have or now never would have. Every dream I had prior to the onset of my symptoms felt as if they had been yanked out of reach and the mourning period was ugly.

Ultimately, it was extensive therapy that taught me how letting go was the only way out from this spiral. Internalizing the blame I had placed in various places was basically like swallowing poison and expecting it to cure me. I was faced with the reality that the life I was leading could be the life that I wanted. All I had to do was start accepting what I could and couldn’t change. I couldn’t bear the feeling of seeing more life slip through my subluxing fingers.

My illness did not teach me how to love myself.

Self-love and self-care were at the back of my mind for years when I was seeking a diagnosis. Being sick was and is a full-time job, and taking any time off to give myself a break felt disingenuous; it was almost in the vein of thinking if I could congratulate myself on the small things (like not going to the ER), I was being pathetic. When I had flares, I berated myself for wishing for the luxury of a walk in the yard or even some quiet sleep, because I knew those would only aggravate my symptoms.

Self-love is real, y’all, and it took me ages to know it. I learned through therapy that being kind to myself was just as important to my health as taking my meds. It was the revelation that turned my perception of my body from a prison to a home I could be proud of. Sure, there are days where I still wish it all away (mostly hunched over the toilet or hauling my wheelchair over a curb), but I can pull myself back, now, to see I am more than a collection of symptoms. I am someone worthy of love, even when I can’t find reason to.

A version of this story originally appeared on

Photo credit: Tom Merton/Getty Images

Originally published: February 22, 2019
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home