How has Sjögren's affected your life (either physically, emotionally, financially)?:
Due to my Sjögren’s worsening and flare ups becoming more aggressive, I had to transition careers which caused me to financially struggle for awhile. It also changed my life. As a dancer, I can no longer do the same movements I once did with full expression. Even a couple of minutes of movement feels like an hour run.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Following the Sjögren’s page and website for the latest news has made me feel assured and less alone. Whenever my symptoms feel unique to my situation I can rest assured connecting with others makes me realize my symptoms aren’t so unique actually.
Where/who do you go to for support with Sjögren's?:
Instagram and Reddit.
Please finish the following sentence: "Sjögren's has taught me...":
To move slow and honor my body and mind. If it’s asking for rest, honor that.
What do you wish people knew about your Sjögren’s?:
I wish people knew my Sjögren’s isn’t what a Google search will tell them. It’s not dry eyes and mouth. It’s extreme fatigue, it’s pain in my joints and muscles. It’s migraines that turn into extreme pain near my neck. It’s esophageal dysmotility. It’s me being okay one day and disabled the next.
What advice would you give to someone newly diagnosed?:
Seek community. Having people who understand you and can help you on tough days can make all the difference. Also seeking a community of people who also suffer from Sjögren’s can help you feel less alone and more informed.
What does it mean to "thrive" while living with Sjögren's?:
Thriving while living with Sjögren’s means honoring who I am at my core. I may not be able to do the things I once loved but being able to honor my artistic and creative self still honors who I am.
How do you incorporate self-care with managing Sjögren's?:
Prior to my Sjögren’s becoming more aggressive, I would’ve said dancing was how I poured into my cup. Now self care means slowing down, resting and honoring my body with slow movement. It’s making sure I’m taking care of my mental and emotional self through arts and crafts and journaling. On a more clinical note, it’s moisturizing my body, eyes and mouth to avoid discomfort.
What inspires you to keep going on hard days?:
On hard days, I truly have to remind myself that this is a journey. Some days will be hard, but knowing tomorrow can hold a whole new feeling, physically and mentally, keeps me going.
What’s your best Sjögren’s tip?:
My best Sjögren’s tip is to carry an emergency kit. Having a small pill case with your essentials in case you forget to take them, having eye lubricants, dry mouth lozenges and things essential to your Sjögren’s experience!
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Click Here to Learn More About Sjögren's Awareness Month
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Due to my Sjögren’s worsening and flare ups becoming more aggressive, I had to transition careers which caused me to financially struggle for awhile. It also changed my life. As a dancer, I can no longer do the same movements I once did with full expression. Even a couple of minutes of movement feels like an hour run.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Following the Sjögren’s page and website for the latest news has made me feel assured and less alone. Whenever my symptoms feel unique to my situation I can rest assured connecting with others makes me realize my symptoms aren’t so unique actually.
Where/who do you go to for support with Sjögren's?:
Instagram and Reddit.
Please finish the following sentence: "Sjögren's has taught me...":
To move slow and honor my body and mind. If it’s asking for rest, honor that.
What do you wish people knew about your Sjögren’s?:
I wish people knew my Sjögren’s isn’t what a Google search will tell them. It’s not dry eyes and mouth. It’s extreme fatigue, it’s pain in my joints and muscles. It’s migraines that turn into extreme pain near my neck. It’s esophageal dysmotility. It’s me being okay one day and disabled the next.
What advice would you give to someone newly diagnosed?:
Seek community. Having people who understand you and can help you on tough days can make all the difference. Also seeking a community of people who also suffer from Sjögren’s can help you feel less alone and more informed.
What does it mean to "thrive" while living with Sjögren's?:
Thriving while living with Sjögren’s means honoring who I am at my core. I may not be able to do the things I once loved but being able to honor my artistic and creative self still honors who I am.
How do you incorporate self-care with managing Sjögren's?:
Prior to my Sjögren’s becoming more aggressive, I would’ve said dancing was how I poured into my cup. Now self care means slowing down, resting and honoring my body with slow movement. It’s making sure I’m taking care of my mental and emotional self through arts and crafts and journaling. On a more clinical note, it’s moisturizing my body, eyes and mouth to avoid discomfort.
What inspires you to keep going on hard days?:
On hard days, I truly have to remind myself that this is a journey. Some days will be hard, but knowing tomorrow can hold a whole new feeling, physically and mentally, keeps me going.
What’s your best Sjögren’s tip?:
My best Sjögren’s tip is to carry an emergency kit. Having a small pill case with your essentials in case you forget to take them, having eye lubricants, dry mouth lozenges and things essential to your Sjögren’s experience!
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month