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  • Writer's pictureCristina Motoya

When a Child Can’t Cry, Don’t Turn a Blind Eye

As a child, I watched a Colombian soap opera called "I Love Paquita Gallego." The plot was about a girl named Paquita, who was under a spell that prevented her from crying. A tarot reader advised her mother that if Paquita couldn't cry, she would never be truly happy.

One day, my aunt was angry at my cousins and me for not completing the chores we were asked to do. I was very upset; my cousins started crying uncontrollably, and I just stared at my aunt, wanting to cry, but no tears were coming down my face. She yelled, "Hey, Paquita! Come over here and pick up the mess.”

Little did I know that my journey of managing life with Sjögren's Disease (previously known as Sjögren's Syndrome) would begin when my aunt called me Paquita. Throughout my childhood and teenage years, multiple pediatricians had a difficult time diagnosing my condition. At first, I was diagnosed with recurrent mumps, which is a viral infection that typically occurs only once in your lifetime. 12 years later, it turned out that I had Sjogren's, which often presents in children with recurrent swollen and painful parotid glands, unlike its presentation in adults.

I was not only a child without tears; I found myself choking on my grandma's comforting meals due to the lack of saliva. Enduring various digestive disorders, I felt as parched as the Sahara Desert, unable to quench my thirst. In my quest for control, I turned to the one aspect I could manage—food—resulting in the development of an eating disorder that persisted until my early 20s when I received a diagnosis of Rheumatoid Arthritis and Sjogren’s Syndrome.

Upon my arrival in Canada as a new immigrant in 2007, my journey took a different turn. While my diagnosis of RA received recognition and treatment, Sjögren's lingered in the shadows of medical gaslighting. Meanwhile, my digestive symptoms worsened, causing extreme abdominal pain, difficulty swallowing, loss of appetite and rapid weight loss. All those symptoms were mistakenly disregarded as irritable bowel syndrome, yet again, another erroneous diagnosis. 

As a dietitian, I initially perceived Sjögren's as a mere nuisance syndrome – a perception that proved to be drastically incorrect. I finally unearthed some answers in 2015 when I joined the Sjögren's Society of Canada. Since then, I have become a patient advocate, steadily gaining recognition as a dietitian with an understanding of Sjögren's and its digestive manifestations.

Sjögren's is finally being recognized as a systemic autoimmune disease that not only causes dryness but also profound fatigue, chronic pain, and significant organ involvement, such as gastrointestinal dysmotility, neuropathies, and lymphomas.

As a patient partner and healthcare provider, I have been involved in the Outcomes Measures in Rheumatology (OMERACT) Sjogren's Disease working group. This group aims to identify and prioritize symptom domains that should be included in clinical trials with a greater appreciation of systemic manifestations, not just dryness.

Even though there is no targeted treatment available for Sjögren's, I have taken it upon myself to raise awareness about the impact of Sjogren's on patients' gut health and quality of life. My efforts started with a workshop I presented at the Canadian Rheumatology Association Annual Scientific Meeting in 2022. Since then, I've participated in several Sjögren's events in Canada, the USA, and Spain. This year, I started running free webinars to help individuals manage common digestive disorders through diet and lifestyle strategies.

I cannot remember the last time I cried for happiness, anger, or sadness. Living with an unrecognized disease slowly dimming your light can make you realize that without tears, there is no true happiness, as the tarot reader had predicted for Paquita Gallego.

However, I believe I can inspire hope in other individuals with Sjogren's whose symptoms are being ignored by healthcare providers. Although I wish I did not have Sjogren's or RA, as these diseases have caused many life detours and shattered dreams, they have also taught me resilience and introduced me to wonderful people whom I wouldn't have met otherwise.

I firmly believe that better treatments or even a cure will be available in my lifetime. In the meantime, I'm confident that my voice, experience, and knowledge as a patient and a dietitian can help relieve suffering in those who are being dismissed and isolated.

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