How has Sjögren's affected your life (either physically, emotionally, financially)?:
Living with Sjögren’s is a constant battle filled with ups and downs. While I try to live as "normal" a life as possible, flare-ups and random infections often hit hard—bringing extreme fatigue, joint pain, severely dry skin, breathing difficulties, and even eye sensitivity to light. Some days, I can’t manage even half of what I did the day before. The unpredictability can be overwhelming. Emotionally, it's incredibly taxing. Some people may not fully understand what I’m going through—not out of malice, but because it’s hard to grasp unless you've lived it. I often worry about being left out, misunderstood, or looked down upon. I feel constant pressure to keep up and perform, even when my body is begging me to rest. It’s exhausting. Despite trying to stay positive, the emotional toll can leave me feeling sad and defeated. Financially, it’s equally challenging. The cost of ongoing treatments like immunosuppressants, Plaquenil, and prednisolone already puts a strain on my budget. When infections strike, the added medical expenses often push me well over my monthly limit. Sjögren’s has deeply affected every aspect of my life—physically, emotionally, and financially—but I continue doing my best to adapt and cope, even on the hardest days.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
To be honest, I had no idea that support groups for Sjögren’s even existed. But ever since I discovered them, I’ve found comfort in reading the stories and experiences shared by fellow patients. It’s reassuring to know I’m not alone in this journey, especially coming from Malaysia, where not many people are even aware of what Sjögren’s is. People may have heard of Lupus, but Sjögren’s is still largely unknown. I consider myself fortunate to have a good physician who has been looking after me since my diagnosis. He not only monitors my condition closely but also takes the time to educate me about the illness and what I should look out for. Most importantly, he encourages me to continue living my life fully—reminding me not to stop doing the things I love, like attending concerts and traveling, as long as I take the necessary precautions. Connecting with the community and having strong medical support has helped me feel seen, supported, and empowered to navigate life with SjD a little more confidently.
Where/who do you go to for support with Sjögren's?:
For support, I primarily turn to my doctor, who has been treating me since I was first diagnosed. He has been a consistent source of medical guidance, emotional reassurance, and encouragement throughout my journey with Sjögren’s. I truly value his care and dedication. While I haven’t asked for his consent to mention his name publicly, I’m incredibly grateful to have a physician who not only manages my treatment but also reminds me to keep living life to the fullest.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s has taught me to listen to my body and slow down when I need to. It’s shown me that resilience isn’t about doing everything—it’s about showing up for myself, even on the days when I feel like I can’t. I’ve learned that it’s okay to not be okay sometimes, and that seeking rest, support, and self-compassion isn’t a weakness—it’s a form of survival. Through it all, I’ve come to appreciate the quiet strength it takes to keep going, one day at a time.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s is more than just dryness or fatigue—it’s an invisible illness that affects every part of my life. Some days, I may look fine on the outside, but inside, I’m dealing with pain, exhaustion, and symptoms that can be unpredictable and overwhelming. I wish people understood that I’m not being lazy or flaky when I cancel plans or need extra rest—it’s because I’m listening to my body. Most of all, I wish others could see that while I may be strong and capable, I’m also carrying a lot, and a little compassion or understanding can make all the difference.
What advice would you give to someone newly diagnosed?:
First, take a deep breath—you’re not alone. Getting diagnosed with Sjögren’s can feel overwhelming, but it’s the first step toward understanding your body and taking control of your health. Learn as much as you can about the condition, and don’t hesitate to ask questions or seek second opinions. Be kind to yourself, and don’t feel guilty for needing rest. Connect with others who understand, and hold on to the things that bring you joy. Life may be different now, but it can still be full and meaningful.
What does it mean to "thrive" while living with Sjögren's?:
To me, thriving with Sjögren’s means finding joy in the little things, even on tough days. It’s about listening to my body, giving myself grace, and not letting the illness define who I am. I may move slower, but I’m still moving forward—and that’s thriving.
How do you incorporate self-care with managing Sjögren's?:
I’m still finding my footing when it comes to self-care. Working in a demanding full-time job as a Clinical Research Associate while also pursuing my Master’s in Counseling means rest is something I often struggle to get enough of. For me, self-care is all about planning ahead. I schedule my work and study commitments in advance, building in buffers to accommodate downtime when needed. On good days, I push forward and get as much done as I can; on bad days, I slow down and give myself permission to rest. Staying hydrated, being mindful of what I eat, and setting aside 5 to 10 minutes each morning for simple mindfulness activities have all become important parts of my routine. Managing Sjögren’s while juggling two major roles is definitely stressful, but listing out my priorities helps me stay focused and grounded. It may not be perfect, but it’s what works for me right now—and that, in itself, is self-care
What inspires you to keep going on hard days?:
To be honest, what truly keeps me going—especially on the hardest days—are my concert and travel memories, especially my experiences with Bigbang, and in particular, Choi Seung Hyun. Some people might laugh when I say this, but during the first six months after my diagnosis, I was in really bad shape. I could barely function like I used to—it was one of the darkest periods of my life. One day, I stumbled upon old photos and posts of myself traveling and attending Bigbang’s concert in Korea. I remembered the joy, the energy, and how alive I felt. That version of me—that experience—became my motivation. I want to feel that again. I want to create more memories like that. And that hope keeps me going.
What’s your best Sjögren’s tip?:
Listen to your body. Rest as much as you can and keep yourself hydrated, eat mindfully, invest in good moisturisers for your skin.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Living with Sjögren’s is a constant battle filled with ups and downs. While I try to live as "normal" a life as possible, flare-ups and random infections often hit hard—bringing extreme fatigue, joint pain, severely dry skin, breathing difficulties, and even eye sensitivity to light. Some days, I can’t manage even half of what I did the day before. The unpredictability can be overwhelming. Emotionally, it's incredibly taxing. Some people may not fully understand what I’m going through—not out of malice, but because it’s hard to grasp unless you've lived it. I often worry about being left out, misunderstood, or looked down upon. I feel constant pressure to keep up and perform, even when my body is begging me to rest. It’s exhausting. Despite trying to stay positive, the emotional toll can leave me feeling sad and defeated. Financially, it’s equally challenging. The cost of ongoing treatments like immunosuppressants, Plaquenil, and prednisolone already puts a strain on my budget. When infections strike, the added medical expenses often push me well over my monthly limit. Sjögren’s has deeply affected every aspect of my life—physically, emotionally, and financially—but I continue doing my best to adapt and cope, even on the hardest days.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
To be honest, I had no idea that support groups for Sjögren’s even existed. But ever since I discovered them, I’ve found comfort in reading the stories and experiences shared by fellow patients. It’s reassuring to know I’m not alone in this journey, especially coming from Malaysia, where not many people are even aware of what Sjögren’s is. People may have heard of Lupus, but Sjögren’s is still largely unknown. I consider myself fortunate to have a good physician who has been looking after me since my diagnosis. He not only monitors my condition closely but also takes the time to educate me about the illness and what I should look out for. Most importantly, he encourages me to continue living my life fully—reminding me not to stop doing the things I love, like attending concerts and traveling, as long as I take the necessary precautions. Connecting with the community and having strong medical support has helped me feel seen, supported, and empowered to navigate life with SjD a little more confidently.
Where/who do you go to for support with Sjögren's?:
For support, I primarily turn to my doctor, who has been treating me since I was first diagnosed. He has been a consistent source of medical guidance, emotional reassurance, and encouragement throughout my journey with Sjögren’s. I truly value his care and dedication. While I haven’t asked for his consent to mention his name publicly, I’m incredibly grateful to have a physician who not only manages my treatment but also reminds me to keep living life to the fullest.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s has taught me to listen to my body and slow down when I need to. It’s shown me that resilience isn’t about doing everything—it’s about showing up for myself, even on the days when I feel like I can’t. I’ve learned that it’s okay to not be okay sometimes, and that seeking rest, support, and self-compassion isn’t a weakness—it’s a form of survival. Through it all, I’ve come to appreciate the quiet strength it takes to keep going, one day at a time.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s is more than just dryness or fatigue—it’s an invisible illness that affects every part of my life. Some days, I may look fine on the outside, but inside, I’m dealing with pain, exhaustion, and symptoms that can be unpredictable and overwhelming. I wish people understood that I’m not being lazy or flaky when I cancel plans or need extra rest—it’s because I’m listening to my body. Most of all, I wish others could see that while I may be strong and capable, I’m also carrying a lot, and a little compassion or understanding can make all the difference.
What advice would you give to someone newly diagnosed?:
First, take a deep breath—you’re not alone. Getting diagnosed with Sjögren’s can feel overwhelming, but it’s the first step toward understanding your body and taking control of your health. Learn as much as you can about the condition, and don’t hesitate to ask questions or seek second opinions. Be kind to yourself, and don’t feel guilty for needing rest. Connect with others who understand, and hold on to the things that bring you joy. Life may be different now, but it can still be full and meaningful.
What does it mean to "thrive" while living with Sjögren's?:
To me, thriving with Sjögren’s means finding joy in the little things, even on tough days. It’s about listening to my body, giving myself grace, and not letting the illness define who I am. I may move slower, but I’m still moving forward—and that’s thriving.
How do you incorporate self-care with managing Sjögren's?:
I’m still finding my footing when it comes to self-care. Working in a demanding full-time job as a Clinical Research Associate while also pursuing my Master’s in Counseling means rest is something I often struggle to get enough of. For me, self-care is all about planning ahead. I schedule my work and study commitments in advance, building in buffers to accommodate downtime when needed. On good days, I push forward and get as much done as I can; on bad days, I slow down and give myself permission to rest. Staying hydrated, being mindful of what I eat, and setting aside 5 to 10 minutes each morning for simple mindfulness activities have all become important parts of my routine. Managing Sjögren’s while juggling two major roles is definitely stressful, but listing out my priorities helps me stay focused and grounded. It may not be perfect, but it’s what works for me right now—and that, in itself, is self-care
What inspires you to keep going on hard days?:
To be honest, what truly keeps me going—especially on the hardest days—are my concert and travel memories, especially my experiences with Bigbang, and in particular, Choi Seung Hyun. Some people might laugh when I say this, but during the first six months after my diagnosis, I was in really bad shape. I could barely function like I used to—it was one of the darkest periods of my life. One day, I stumbled upon old photos and posts of myself traveling and attending Bigbang’s concert in Korea. I remembered the joy, the energy, and how alive I felt. That version of me—that experience—became my motivation. I want to feel that again. I want to create more memories like that. And that hope keeps me going.
What’s your best Sjögren’s tip?:
Listen to your body. Rest as much as you can and keep yourself hydrated, eat mindfully, invest in good moisturisers for your skin.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month