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Living with the Unseen: Finding Strength and Community after an Autoimmune Diagnosis - Dermatomyositis


Diana

Hi! I am Diana, a digital creative veteran, juggling digital design and art education, while also supporting my nephew with special needs. When I'm not working, I explore the world through travel, cycling, hiking, and museum visits.

It all began with a persistent cough that lingered for a solid 8-9 months. Initially dismissed as bronchitis or pneumonia, it eventually revealed itself as something far more complex. Joint pain crept in, culminating in a frightening incident where my leg gave way after a cycling workout. Another episode left me unable to get off the sofa following a UTI infection. The symptoms escalated: stiffening fingers, reddened knuckles, and an inability to close my fist. Weight loss became a growing concern, with 5-8kg disappearing within a few months.

Despite using the Symbicort inhaler, my persistent cough would not relent. Further blood tests at the Polyclinic

led to a referral to SGH ARC. The results revealed muscle inflammation mirroring the lung issue. A week of

sleepless nights battling frozen shoulder finally pushed me to seek admission in late November 2020. The

following 10 days were a whirlwind of exhaustive tests: a muscle biopsy, pap smear, mammogram, colonoscopy, gastroscopy, CT scans (upper torso and lungs), X-rays, electromyography (EMG), and a blood draw yielding nearly 30 vials.

I was admitted to Singapore General Hospital at the beginning of the COVID-19 pandemic, and it proved to be an exceptionally sombre and isolating period. Given the presence of elderly and young family members at home, I opted not to have them visit during my stay. The hospital had stringent visitation protocols in place at that time, further contributing to the feelings of loneliness and sadness throughout the duration of my hospitalization.

Upon receiving the diagnosis of Dermatomyositis (DM), Interstitial Lung Disease (ILD), and Sclerodactyly, I found it challenging to process and digest this information. The realization that my health might be permanently compromised, coupled with the prospect of lifelong medication, felt like a death sentence. The financial burden of medication added another layer of stress to the emotional rollercoaster.

I now take daily doses of Telfast, 5mg prednisolone and Cellcept 1500MG day and night. My life has changed. Swallowing is sometimes an issue, and muscle weakness affected my bladder control. Pain is a constant companion, and for eight months, a torn hip muscle made sitting unbearable. Physical therapy offered temporary relief, but managing discomfort became my new reality: careful sitting positions, short work breaks, and cautious workouts to avoid further injury. I also occasionally use the TENS machine to manage my muscle aches.

Light sensitivity, another unwelcome addition, forced me to invest in sunblock and adopt protective measures like hats, umbrellas, and UV clothing. This, combined with the ever-present need to wear a mask, add another layer to the daily challenges, especially in our hot and humid weather.

The daily grind has become a challenge due to my autoimmune condition. Fatigue, chronic pain, and the constant threat of unpredictable flare-ups have taken a toll. Three hospitalizations in the past year, the most recent triggered by pneumonia leading to a severe asthma attack, have further impacted my stamina. Daily tasks like walking uphill or running errands now leave me breathless. The medications, although necessary, come with their own set of side effects, causing significant weight gain, mental fatigue, and occasional mood swings.

As a freelancer, I have some control over my workload, but stressful periods trigger flare-ups more frequently. Balancing caregiving duties with self-care is crucial. Prioritizing my well-being means accepting limitations and not pushing myself beyond my capacity, especially when it comes to my caregiving responsibilities for my 11 years old nephew. My family, close friends, and fellow "spoonies" (Maggie & Sherry) have been my lifeline. We share frustrations, support each other with positivity, and offer a safe space to rant and find solace in shared experiences. Additionally, engaging in overseas online support groups for Dermatomyositis patients has been invaluable in gaining insights in my condition. It is important to be proactive to research and seek knowledge to empower us to navigate our health journey.

While the fight against a rare disease like Dermatomyositis can feel isolating, my resilience and positivity fuel my advocacy for the autoimmune community. Our struggles, though invisible to many, are very real. That is why advocating for ourselves is crucial, although the struggle lies in finding doctors who truly believe and understand our pain. I will continue to be a voice for myself and countless others, fighting for understanding and support in the face of unseen challenges.

To my fellow warriors, self-compassion is our armour. We did not choose these battles, but we choose how we fight them. Our unique challenges and rare diseases give us a powerful voice. Let us use it to raise awareness, foster understanding, and show the world the strength within. Living with an autoimmune disease is not a burden, but an opportunity to live with purpose. Share your journey, support others, and find joy in every moment. Even amidst the challenges, blessings can be found.

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