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A 10-year Adventure: Invisible Strength through Sjogren’s Syndrome


Taken on the train heading to Taitung

I’m a communications professional in my early thirties and I love travelling. It is one of the few things that gets me excited and distracts me from the pain that comes with my condition, Sjogren’s Syndrome. In 2014, during my first job, I had an onset of high fever, severe headache and indescribable pain throughout my body for weeks. After many visits to my family GP, she suspected it could be an autoimmune condition and advised me to seek further help at a hospital. That was probably the first time I heard the term ‘autoimmune’. I would have never expected it to become a familiar stranger in my life.

After running countless tests, I was hospitalised for a week. The hospital arranged for a lip biopsy with the ENT department to test for a specific autoimmune condition. Some of my saliva glands in my mouth (area touching lower front teeth) were removed during the terrifying process. I can still recall the burning smell from the laser equipment while my face was covered up. The opening had to be stitched back and recovery took weeks. I was new in my first job then and headed back to work soon after. The wound bled when I tried to chew or speak, so I was mostly on a liquid diet and silent at work.

I was depressed that my career had to begin this way. Having completed years of studies, I was full of excitement about how my career would pan out. It was incredibly difficult dealing with a medical condition that I knew so little about, and my employer concerned and confused about my constant MCs. Exhausted by this ordeal, I decided to leave the role after a full year. That turned out to be a good move as my dad unfortunately suffered a stroke and passed away shortly after I left my job. I gave myself space to cope with my family and health before beginning my job search. My flares are some of my toughest moments as they can happen anytime, anywhere and at any intensity. I push through these symptoms during holidays, celebrations or work events and try to find rest in between. However, as much as I try to sleep on a daily basis, I wake up exhausted, like I have not slept at all. I suffer from varying levels of joint pain every day, and it could be in any joint of the body, both big and small. To combat the dryness of my eyes and mouth, I bring along eye drops and a huge water bottle with me wherever I go. My blood pressure also falls really low without warning, and I have both fainted and encountered giddy spells at the MRT on several occasions, even on days I felt okay. I am on Hydroxychloroquine and have been testing out different dosage levels with my specialist in the past years to manage my condition. I also take Arcoxia for my pain and go for annual eye tests to ensure that my vision is not affected. Throughout these years, I went through countless ups and downs, including depressive stages and gained greater understanding of my body over time. I recently got married to my husband after 10 years together. He has been my rock through the years with Sjogren’s, and has been both patient and supportive as I navigated my condition. Unfortunately, my mom doesn't fully understand Sjogren's and often asks me to take joint supplements to help with my pain. I have learnt not to be mad at this, and understand that her care comes from a good place. I will continue to patiently educate her about my autoimmune condition. Another hurdle I still face is job interviews. While past employment medical tests haven't been an issue, there's always the question of disclosing my condition. It's a balancing act.

 

Through it all, I've gained valuable lessons. Sjogren's may be invisible, but it's shaped me profoundly. I learnt not to be too quick to judge, and the importance of showing kindness, especially when someone might be struggling with an unseen burden. Most importantly, it's shown me the power of a strong support system. It's a reminder that we don't have to face challenges alone.

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