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