How has Sjögren's affected your life (either physically, emotionally, financially)?:
Physically there are days where the fatigue is so bad, I don't have the ability to get up and do what I need to do. It takes away from some activities I might enjoy. My dry eye is the worst, it feels like no matter how often I use drops my eyes are always gritty and dry which makes it hard for me to seem awake and excited. The brain fog can also be bad and unless I'm constantly writing things down I tend to lose my train of thought or forget things easily which is really frustrating. I used to also have terrible teeth before I was diagnosed and felt like no matter what I did I would get cavities, which hurt my self esteem. Emotionally, it's just exhausting to know that sometimes from an outside perspective I might come off as lazy or forgetful when in reality I am just not myself some days and so fatigued. It's also scary to read about how things can get worse, but I try to stay positive.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
It's helped me feel validated and better understand the disease. When I was diagnosed, other than being told that it was an autoimmune disease, I feel like I didn't know much about it. Connecting with other people in the autoimmune community has helped me not be so hard on myself and give myself some grace.
Where/who do you go to for support with Sjögren's?:
Usually facebook groups or the Sjögren's subreddit.
Please finish the following sentence: "Sjögren's has taught me...":
To be kind to myself and others. More patient with myself and others. You never know what someone is going through.
What do you wish people knew about your Sjögren’s?:
It's a chronic illness, and it affects more than just moisture glands. Every day I have to wake up and choose to put the extra effort forward to not just give into the fatigue.
What advice would you give to someone newly diagnosed?:
Give yourself some grace, find a doctor you trust, and let the people know in your circle of support what you're going through. You will need their support.
What does it mean to "thrive" while living with Sjögren's?:
Being able to do the things you want to do, making it to events and plans, exercising, and overall being able to take care of yourself. Even if maybe you need a little extra time to get there.
How do you incorporate self-care with managing Sjögren's?:
Getting as much sleep as I can, taking eye drops with me and keeping some at work, and always making time to take a break and disconnect for the betterment of my brain.
What inspires you to keep going on hard days?:
Knowing that even though it's hard, what I have planned is worth it! My support network also motivates me to give myself some grace but keep going!
What’s your best Sjögren’s tip?:
Preservative free eye drops are the best! They last longer and don't upset your eyes as much! Also, they are easy to take with you on the go.
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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)?:
Physically there are days where the fatigue is so bad, I don't have the ability to get up and do what I need to do. It takes away from some activities I might enjoy. My dry eye is the worst, it feels like no matter how often I use drops my eyes are always gritty and dry which makes it hard for me to seem awake and excited. The brain fog can also be bad and unless I'm constantly writing things down I tend to lose my train of thought or forget things easily which is really frustrating. I used to also have terrible teeth before I was diagnosed and felt like no matter what I did I would get cavities, which hurt my self esteem. Emotionally, it's just exhausting to know that sometimes from an outside perspective I might come off as lazy or forgetful when in reality I am just not myself some days and so fatigued. It's also scary to read about how things can get worse, but I try to stay positive.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
It's helped me feel validated and better understand the disease. When I was diagnosed, other than being told that it was an autoimmune disease, I feel like I didn't know much about it. Connecting with other people in the autoimmune community has helped me not be so hard on myself and give myself some grace.
Where/who do you go to for support with Sjögren's?:
Usually facebook groups or the Sjögren's subreddit.
Please finish the following sentence: "Sjögren's has taught me...":
To be kind to myself and others. More patient with myself and others. You never know what someone is going through.
What do you wish people knew about your Sjögren’s?:
It's a chronic illness, and it affects more than just moisture glands. Every day I have to wake up and choose to put the extra effort forward to not just give into the fatigue.
What advice would you give to someone newly diagnosed?:
Give yourself some grace, find a doctor you trust, and let the people know in your circle of support what you're going through. You will need their support.
What does it mean to "thrive" while living with Sjögren's?:
Being able to do the things you want to do, making it to events and plans, exercising, and overall being able to take care of yourself. Even if maybe you need a little extra time to get there.
How do you incorporate self-care with managing Sjögren's?:
Getting as much sleep as I can, taking eye drops with me and keeping some at work, and always making time to take a break and disconnect for the betterment of my brain.
What inspires you to keep going on hard days?:
Knowing that even though it's hard, what I have planned is worth it! My support network also motivates me to give myself some grace but keep going!
What’s your best Sjögren’s tip?:
Preservative free eye drops are the best! They last longer and don't upset your eyes as much! Also, they are easy to take with you on the go.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month