What My Colleague Didn't Know When She Asked 'What Happened to Your Face?'


Traveling extensively for my job while living with a chronic illness is an adventure. How will I handle my luggage and my cane in the airport? Do I have enough medication to last me for my entire trip? How close to the hotel are the hospital and pharmacy, just in case? Do I have enough cash with me to pay for help if my body fails me (bag carrying, taxis, etc.)?

One trip each year is always harder than the others. It is the “big deal” annual event in my industry. Everyone who is anyone is here to meet and greet and network and buy and sell and determine business plans for the next year. I always arrive at this event exhausted from all of the preparation, but one year was particularly brutal. In the two months leading up to the trip:

My father died unexpectedly, causing unimaginable stress.

I began having trouble breathing and couldn’t walk further than 10 feet without sitting down to rest.

I was on “ridiculous” doses of steroids trying to hold my body together while it was causing the typical “moon face.”

I had just started a new treatment and was dealing with unanticipated side effects.

I worked 18 hours a day getting ready for this event and was beyond exhausted.

By the time I arrived at the hotel I was tired and fragile, but looking forward to meeting with colleagues and talking business. I was going to make the most of this event despite my personal tragedy and my frustrating disease.

Shortly after arriving, I met up with a colleague and her first words upon seeing me were, “What happened to your face?” as she recoiled because of my appearance.

How did she know this tired, fragile, not feeling well, on-way-too-many-steroids-for-far-too-long vulnerable version of myself would be uplifted and encouraged by a horrified reaction to my disease-ravaged body? (O sarcasm font, where art thou?)

This happened right after I landed a huge contract that I had been working toward for a few years. It would involve a lot of work including on-camera promotion and was basically a “woohoo!” type of deal. Instead of celebrating though, I was devastated my disease was more prominent than my work and could only worry about filming with this steroid “moon face.”

I never told this colleague how she devastated me that day. I survived the industry event, fulfilled the contract and showed up for my on-camera appearances despite the “moon face.” I’m tickled to report my disease has calmed down since then, my “moon face” is going away and I’m looking forward to being exhausted for the next industry event. I hope no one recoils from my appearance then, but even if they do, I’ll keep trying to live an outstanding life in spite of my diagnosis.

Follow this journey on Relapsing Polychondritis


Find this story helpful? Share it with someone you care about.


Related to Chronic Illness

Woman, shirtless with her back to the camera.

We Challenged People to Write Honest Captions for Their Facebook Photos

Our social media identity is a carefully curated version of ourselves — and unlike real problems, an unwelcomed Facebook photo can be rid off with a single click. While a picture is worth a thousand words, how often do we use photos on social media to tell the whole story? Those who live with mental [...]

To the Child Who Didn't Hear Your Name Called at the End-of-Year Award Ceremony

Ah, end of term. Sports days, shows, school trips, report cards and of course the all important end-of-year award ceremony. Proud parents just as excited as their children, relieved teachers glad to show someone really loved their teaching, and halls full of eager little ones hoping and praying their name will be called. You already [...]
city commuters

The Things I Sense Right After I’ve Had a Seizure

I’m participating in everyday rudimentary tasks, from sitting in class, running a mile or hanging out with my friends. Until I’m no longer participating. My body is present, but my mind has checked out. All of these things fade into darkness. Silence. Oblivion. There is nothing. *** Sensation overload. Too many things at once. My [...]
Pregnant mother and future dad feet on bed and little unborn baby shoes

The Before and After of a Mom to Children With Special Needs

Before. Before is a life captured in old photos that have been shoved in a box instead of displayed in frames. Before has no wrinkles, sleeps 10 hours a day and ponders ambitious career directions. It’s best to ignore Before.. And then came a 15-year college reunion, which despite my resistance of acknowledging Before, sounded liked a good [...]