How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögren’s has affected every aspect of my life. I spent a long time after my diagnosis grieving the old me, especially because I’m still young. I used to take my healthy body for granted. I’ve lost friendships and the ability to do things I used to do, like high impact exercise. It’s even had an impact on seemingly simple things like using my computer, which in turn affects my work. But I’ve also gained resiliency and a new appreciation for life. Where there’s loss, there’s also gain.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I would not be in the place I am now mentally if it weren’t for connecting with others who also have Sjögren’s Disease. I have learned it does not have to be so scary, and to just take it one symptom at a time. It can be easy to get lost in the “what ifs” of your future, but focusing on the now is a much more productive way to spend your time.
Where/who do you go to for support with Sjögren's?:
I turn to my Sjögren’s support group for support with Sjögren’s. It’s been especially beneficial to connect with other young women who also have Sjögren’s, because while it’s the same disease, it can affect people of a different age in different ways. Many people don’t know that people of any gender or age can be diagnosed with Sjögren’s, not just women over a certain age.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s has taught me how to be resilient. I never expected I’d have to deal with the diagnosis of an incurable, systemic disease at such a young age. Now I know that I can handle anything life throws my way.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s can affect people of all ages and genders, and that it’s not just dry eyes and a dry mouth. It can affect every organ and system in your body, increases your risk of cancer and can lead to life-threatening complications.
What advice would you give to someone newly diagnosed?:
Connect with others. Don’t obsess over your symptoms or spend all your time researching the disease or your symptoms on the internet. It’s important to be informed and learn about the disease, but also make sure you’re still spending time on your hobbies and doing things you enjoy. I always remind myself “what you feed, grows.” The more time you spend fixating on your symptoms, the more difficult it becomes to focus on anything else.
What does it mean to "thrive" while living with Sjögren's?:
What it means to thrive while living with Sjögren’s is not letting the disease take over. Research the disease. Learn more about your body. Understand how it affects you and don’t feel guilty about setting boundaries or having limitations. But don’t stop living your life! You may not be able to do everything you used to do, but that’s okay. You can still learn new things and try out new hobbies.
How do you incorporate self-care with managing Sjögren's?:
Self care can look a little differently with Sjögren’s, but it is so important! I set reminders for myself to do things like stay hydrated, do simple exercise like walking my dog, taking my medications, and moisturizing! Self care can be fun if you get creative.
What inspires you to keep going on hard days?:
Everyone with Sjögren’s, no matter how it’s affected them, inspires me. I’m inspired by the people who continue to do amazing, unbelievable things in spite of the disease. I’m also inspired by the people who have been affected by Sjögren’s profoundly and have lost so so much, and continue to push through.
What’s your best Sjögren’s tip?:
Please don’t ever feel unaccomplished when you see someone with Sjögren’s running a marathon or travelling the world. Some days, just surviving the day is an accomplishment. We are all affected differently by this disease and no two stories are the same.
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)?:
Sjögren’s has affected every aspect of my life. I spent a long time after my diagnosis grieving the old me, especially because I’m still young. I used to take my healthy body for granted. I’ve lost friendships and the ability to do things I used to do, like high impact exercise. It’s even had an impact on seemingly simple things like using my computer, which in turn affects my work. But I’ve also gained resiliency and a new appreciation for life. Where there’s loss, there’s also gain.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I would not be in the place I am now mentally if it weren’t for connecting with others who also have Sjögren’s Disease. I have learned it does not have to be so scary, and to just take it one symptom at a time. It can be easy to get lost in the “what ifs” of your future, but focusing on the now is a much more productive way to spend your time.
Where/who do you go to for support with Sjögren's?:
I turn to my Sjögren’s support group for support with Sjögren’s. It’s been especially beneficial to connect with other young women who also have Sjögren’s, because while it’s the same disease, it can affect people of a different age in different ways. Many people don’t know that people of any gender or age can be diagnosed with Sjögren’s, not just women over a certain age.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren’s has taught me how to be resilient. I never expected I’d have to deal with the diagnosis of an incurable, systemic disease at such a young age. Now I know that I can handle anything life throws my way.
What do you wish people knew about your Sjögren’s?:
I wish people knew that Sjögren’s can affect people of all ages and genders, and that it’s not just dry eyes and a dry mouth. It can affect every organ and system in your body, increases your risk of cancer and can lead to life-threatening complications.
What advice would you give to someone newly diagnosed?:
Connect with others. Don’t obsess over your symptoms or spend all your time researching the disease or your symptoms on the internet. It’s important to be informed and learn about the disease, but also make sure you’re still spending time on your hobbies and doing things you enjoy. I always remind myself “what you feed, grows.” The more time you spend fixating on your symptoms, the more difficult it becomes to focus on anything else.
What does it mean to "thrive" while living with Sjögren's?:
What it means to thrive while living with Sjögren’s is not letting the disease take over. Research the disease. Learn more about your body. Understand how it affects you and don’t feel guilty about setting boundaries or having limitations. But don’t stop living your life! You may not be able to do everything you used to do, but that’s okay. You can still learn new things and try out new hobbies.
How do you incorporate self-care with managing Sjögren's?:
Self care can look a little differently with Sjögren’s, but it is so important! I set reminders for myself to do things like stay hydrated, do simple exercise like walking my dog, taking my medications, and moisturizing! Self care can be fun if you get creative.
What inspires you to keep going on hard days?:
Everyone with Sjögren’s, no matter how it’s affected them, inspires me. I’m inspired by the people who continue to do amazing, unbelievable things in spite of the disease. I’m also inspired by the people who have been affected by Sjögren’s profoundly and have lost so so much, and continue to push through.
What’s your best Sjögren’s tip?:
Please don’t ever feel unaccomplished when you see someone with Sjögren’s running a marathon or travelling the world. Some days, just surviving the day is an accomplishment. We are all affected differently by this disease and no two stories are the same.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month