Wearing a Fake Smile to Get Through the Day

Lisa Weber avatar

by Lisa Weber |

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Can you recall a time when you smiled so much that your cheeks became sore?

Perhaps it was a day of joy and celebration — one you’ll happily remember forever. Or maybe you have a chronic illness and wear a smile all day to avoid ruining the party for everyone else.

When I’m around a crowd of people, the fake smile protects me from having to share how I feel. If I look happy, people don’t ask me if I’m OK. I’m not a person who lies; I’m brutally honest to a fault. If you ask me how I’m doing, I will lay it all out for you. But when I’m at a party, I don’t want to ruin the festivities by sharing all that ails me. So, I wear a fake smile.

My smile is anything but natural.

The unnaturally forced grin is no easy task. I’ve lost most of the tissue in my lips, so I carefully adjust the tension to make sure my top lip doesn’t rise above my teeth. There are two reasons for this.

Firstly, I’m self-conscious when my upper gum is exposed. I have small teeth, and when I smile those cute choppers take a back seat to the enormous sea of pink gum line. Maybe if I’d been born like this, I wouldn’t think much of it. However, scleroderma changed my smile only five years ago.

Until I adjust and accept my new appearance, I carefully loosen the muscles in my cheeks and open my mouth slightly. This keeps my lip nestled against the top edge of my teeth, where I feel normal.

The second reason I don’t allow my smile to open too wide is to save me from the “my lip is now stuck up in my gums” embarrassment. No joke! One side effect of scleroderma is a dry mouth, thanks to a common comorbid autoimmune disorder called Sjögren’s syndrome.

Having a skinny lip and a dry mouth makes for an interesting combination. If I smile too big, my lip curls under and gets stuck about an inch above my teeth. The only way to get out of that strange maneuver is to manually unroll my mouth using my hands. Awkward is an understatement.

I pretend I’m OK so others can have fun.

My fake smile is getting easier to master. All this practice has retrained my muscles, and they’ve begun to cooperate more. If I do laugh so hard that I can’t overpower my natural response, I simply cover my mouth to hide my Joker-like look. The challenge comes when I have to pretend I’m happy.

Unfortunately, I can’t seem to convince my body to hold off on flare-ups when there are holidays to commemorate. The latest example was Fourth of July.

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During Flare-ups, My Scleroderma Body Pauses Life

For the past two weeks, I’ve been having heart issues. I have a very irregular heartbeat, coupled with extreme dizziness and fatigue. Making dinner leaves me short of breath and on the brink of passing out.

Although I should be lying down until all tests are completed, I rounded up my family, and we went to a friend’s house to have some fun. I didn’t want my favorite people to have to miss a holiday because of scleroderma. And I knew they wouldn’t go if I didn’t.

“Are you sure you’re OK, Mama?” my youngest kept asking me, a worried tone in her voice.

“Of course! I feel great!” I kept reassuring her. I think I missed my calling as an actress. By the time we left the house, everyone was excited and in good spirits.

At one point, I’d almost convinced myself I was doing better, so I got up to get a glass of wine I’d been eyeing for a few hours. I might be able to fake a good mood, but I definitely can’t pretend I’m healthy.

By the time I made it to the bar setup, I was silently gasping for air and gripping the countertop to combat the dizziness. Nope! Still not OK. Yet I still managed to engage in a conversation with a bunch of light chuckles and head nods. Have I become a master of deception?

It’s not easy, but it’s worth it.

All I wanted to do was lie down and cuddle my dogs, but instead, I sat back down and kept forcing a gentle smile to make myself appear happy. Just a typical day living with a chronic illness.

Scleroderma took away my smile, causes me pain, and makes normal routines difficult. But I refuse to let it take away joy from family and friends. I will not allow it to destroy what is most important to me.

If you wear a fake smile to get through your day, you’re doing great! We are strong and resilient people. Continue to find the strength to keep going. Life is worth fighting for.

***

Note: Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Kate Smith avatar

Kate Smith

Exhausted sitting in Rheumatolgy Scleroderma Clinic for 4hrs at a time, bloods, no conversation, no treatment. Marked Mebomian Gland Stasis, 7yrs later tubes inserted, cervical L3/4 stenosed, spine, dehydrated discs, L4/5 stenosed bedbound, pain unbearable. Complete hypomotility of Oesophagus, Reflux disease, demyelination caused by Scleroderma. Inflammoatory disease, no treatment, Lungs sclerotic, scarring, breathless, no preventative treatment, cerebellar vertigo, another hidden disease. NHS bankrupt, No government funding. NO treatment, women dying of Ovarian Cancer, treatment cancelled. Bowel cancer increased, GP ignoring Patients with symptoms, blaming Covid 19, No Hospital being built, no social Housing built since eighties. Untrained Midwifes killing mothers and babies, Obstetricians not covering maternity units. NHS not providing care or safety, systemic throughout country.

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