What You Can’t See Behind My Smile as Someone With Chronic Pain

It was a cold September morning in Colorado when I first starred at myself in the mirror with tears in my eyes, begging myself to be strong.

After an attempt to wipe my never-ending tears, I wobbled myself to my kitchen to make a pot of coffee. It was the weekend and all I wanted to do was lay on my couch and sleep so I couldn’t feel the pain in my joints. They diagnosed me with systemic lupus in 2013, but I always felt like there was a lingering question mark because throughout the years, I wouldn’t test positive and I had questionable symptoms.

Fast forward six years, I found myself again in front of my mirror, unrecognizable after a rare neurological diagnosis, begging myself to hold on. It was 2019 when my symptoms were textbook of Devic’s disease (neuromyelitis optica or NMO) and it wrecked every part of my life and caused me to become half-blind.

What most people can’t see behind my smile at work, the checkout at the store, or the cafe, is the anguish I deal with about my diagnosis.

Most people see my smile, but they can’t see the night before when my husband helped me in and out of a bath because I couldn’t bend my knees.

They can’t see the night my nerve pain tortured my legs and my husband had to listen to me shriek in pain until I’d fall asleep, only to be woken up with the same pain six times in the night.

They can’t see the moments I cried in the work bathroom, vomiting in between teaching.

They can’t see how I limped on a treadmill going at the slowest speed just so I could tell myself I got one foot in front of the other when I hit my pillow at night.

They can’t see the pain my body would feel after a hot shower.

They can’t see the ache in my heart of quitting a job I worked hard for and saying goodbye to students too soon in the year.

They can’t see the pain behind my eyes when they’d take turns going blind because the optic nerves were inflamed.

They can’t see the mental toll of my diagnosis and how it has forever changed my life.

They can’t see me driving to a chemotherapy infusion every two weeks for the rest of my life and the lonely thoughts I have while I sit there for two, sometimes three hours.

They can’t see the fear I get when I think about bearing children and having another relapse only to not be able to see my child because I’m blind. They can’t see the anxiety I deal with about going blind one day like Master Chef winner, Christine Ha who went blind to Devic’s disease in her 20s.

“Despite my diagnosis and the things people will never be able to see, one of the happiest moments during my journey has been when I found the courage to let go of what I couldn’t change.”

Like many people who live with a chronic illness will tell you, just because there is a smile on their face, it doesn’t mean they’re always feeling better.

They’ve learned how to embrace their illness and be thankful for the better moments. They’ve learned to be grateful for those that help them in their worst moments and to cry when they need to.

I read once that, no matter how bad the pain we are feeling is, either physical or mental, as long as we can still feel the love of those that love us, we will survive that pain over and over again.

And this is how we continue to smile despite what you cannot see.