My smile hid a life challenged by invisible illness

Even when I'm grappling with AS symptoms, my appearance can be deceiving

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by Jemma Newman |

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Scrolling through the camera roll on my phone, I stumbled across a photo of myself with a wide smile. My makeup looked flawless and my body slender and strong, but I could see that the smile didn’t reach my eyes.

Instantly, my mind flashed back to 2020, when the image was taken and I was freshly diagnosed with ankylosing spondylitis (AS). I’d finally received the diagnosis through the hospital rheumatology department after getting an MRI of my spine, but I was still barely coping as I struggled to find therapies and medications to manage my disease.

To make matters worse, my husband, Dave, who’s also diagnosed with AS, couldn’t walk because of his symptoms’ severity at the time the photo was taken. His hips and sacroiliac joints were so inflamed and painful that he used a walking cane to slowly maneuver himself around the house.

My seemingly happy appearance in the photo was a façade — a wall of smiles I projected to the world to hide the pain I was experiencing night and day. The day that photo was taken, I’d been called in to model for an activewear label. Modeling wasn’t something I normally did, but I was helping out a friend who wanted to showcase a variety of people wearing athletic clothing for a marketing campaign.

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Celebrating a quiet victory over a physical challenge I used to dread

Fake smiles carefully guarded my invisible illness

As I posed for the photographer, face slathered in makeup and hair sprayed carefully into place, I felt the opposite of happy and healthy. My ribs were on fire as I tried to carefully pull the tight, elasticated workout tops over my head. I blinked under the bright lighting, trying to hide that I’d gotten only an hour or two of sleep the night before because painsomnia (insomnia caused by pain) was constantly keeping me from drifting off into a deep, restorative sleep.

Accepting that modeling photo shoot was a desperate act to show myself that I could still live and have adventures, even if for just a few hours. I wanted to prove that this new, chronic disease-stamped life wasn’t just about surviving or slogging through the day in a fog of fatigue. I wanted to feel excitement again, and a sense of pride from an accomplishment.

After my diagnosis, I was terrified about what the future might hold for our family. We had two small children, ages 2 and 4, but with Dave’s inability to run or walk quickly, he couldn’t look after them by himself. With my frozen-feeling back and rib cage, I was barely able to lift them out of the highchair or push them in a pram.

Though I feel we’re managing our AS fairly well these days, that’s because we’ve had the time and experience to test therapies and find solutions that help. I simply didn’t have that knowledge in the beginning, so I felt constantly worried about the unknown and burdened by unmanaged spine and joint pain.

Kindness can make a world of difference

Seeing the glossy, grinning results of that photo shoot and comparing them with my spiraling health at the time made me realize that we shouldn’t mistake a person’s appearance for what they’re experiencing. Ankylosing spondylitis is an invisible illness, just like many other physical and mental issues, and we shouldn’t assume that a person’s life is perfect just because they’re projecting a positive appearance.

Health and life challenges can be hidden deep, even from the people we’re close to. Supporting a friend or even a stranger and showing extra kindness and patience even if they “look fine” can go a long way toward helping them navigate a tough time in their life.

Note: Ankylosing Spondylitis 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 Ankylosing Spondylitis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.


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