How has Sjögren's affected your life (either physically, emotionally, financially)?:
I feel like I’m 80 years old in a 18 year old's body. I am in pain every day. My joints my jaw my head. I’m emotionally drained. I try and keep my stress under control but having stress causes a flare up and having a flare up causes more stress and it’s just a big circle.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Connecting with the Sjögren’s community has let me feel like there are people out there who understand how I feel. I've only been diagnosed less that 2 years so I have questions all the time and they are always there to answer them.
Where/who do you go to for support with Sjögren's?:
My Sjögren’s support group on facebook.
Please finish the following sentence: "Sjögren's has taught me...":
To treat your body well because it’s the only one you’ll ever have.
What do you wish people knew about your Sjögren’s?:
That even though I look okay 9 times out of 10 I am not.
What advice would you give to someone newly diagnosed?:
Not everything your doctors say will be true. You have to remember you have this disease they don’t.
What does it mean to "thrive" while living with Sjögren's?:
Thriving means doing what I love even though I’m in pain. It’s really hard sometimes but letting this disease slow me down means it wins and I won’t let that happen.
How do you incorporate self-care with managing Sjögren's?:
My self care is managing my Sjögren’s. That’s the first thing I do to feel better.
What inspires you to keep going on hard days?:
Knowing I’m not the only person going through this, and if they can do it I can too.
What’s your best Sjögren’s tip?:
Find people who have this disease because those are the only people that truly get it.
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Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
TOPIC: Being a teenager with Sjögren’s
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew that I would be okay. Less than two years ago, sitting in a hospital bed was the scariest feeling I have ever felt but now I have so much support behind me and I feel like I finally understand this disease.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
1.Benadryl cream for rashes
2.Equate eyedrops
3.Chew sugar-free gum constantly
What is your best advice for another patient dealing with this symptom/ situation?:
You will be okay. It’s gonna be scary and you’re gonna feel alone but eventually it’ll get better.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.:
When I was 17, I was diagnosed with Sjögren’s. I had severe parotid gland swelling. It looked like two baseballs were on the side of my face. I get severe cavities, dry eyes and mouth, joint pain and I can not smell. Your symptoms will frustrate you so badly, but along the way you will find things that work for you.
Click Here to Read More Patient-to-Patient Stories
How has Sjögren's affected your life (either physically, emotionally, financially)?:
I feel like I’m 80 years old in a 18 year old's body. I am in pain every day. My joints my jaw my head. I’m emotionally drained. I try and keep my stress under control but having stress causes a flare up and having a flare up causes more stress and it’s just a big circle.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
Connecting with the Sjögren’s community has let me feel like there are people out there who understand how I feel. I've only been diagnosed less that 2 years so I have questions all the time and they are always there to answer them.
Where/who do you go to for support with Sjögren's?:
My Sjögren’s support group on facebook.
Please finish the following sentence: "Sjögren's has taught me...":
To treat your body well because it’s the only one you’ll ever have.
What do you wish people knew about your Sjögren’s?:
That even though I look okay 9 times out of 10 I am not.
What advice would you give to someone newly diagnosed?:
Not everything your doctors say will be true. You have to remember you have this disease they don’t.
What does it mean to "thrive" while living with Sjögren's?:
Thriving means doing what I love even though I’m in pain. It’s really hard sometimes but letting this disease slow me down means it wins and I won’t let that happen.
How do you incorporate self-care with managing Sjögren's?:
My self care is managing my Sjögren’s. That’s the first thing I do to feel better.
What inspires you to keep going on hard days?:
Knowing I’m not the only person going through this, and if they can do it I can too.
What’s your best Sjögren’s tip?:
Find people who have this disease because those are the only people that truly get it.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month
Patient-to-Patient
TOPIC: Being a teenager with Sjögren’s
What do you wish you knew when first dealing with this symptom/situation?:
I wish I knew that I would be okay. Less than two years ago, sitting in a hospital bed was the scariest feeling I have ever felt but now I have so much support behind me and I feel like I finally understand this disease.
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
1.Benadryl cream for rashes
2.Equate eyedrops
3.Chew sugar-free gum constantly
What is your best advice for another patient dealing with this symptom/ situation?:
You will be okay. It’s gonna be scary and you’re gonna feel alone but eventually it’ll get better.
In a few short sentences, please tell us your story with this symptom and anything additional for advice for another patient going through something similar.:
When I was 17, I was diagnosed with Sjögren’s. I had severe parotid gland swelling. It looked like two baseballs were on the side of my face. I get severe cavities, dry eyes and mouth, joint pain and I can not smell. Your symptoms will frustrate you so badly, but along the way you will find things that work for you.
Click Here to Read More Patient-to-Patient Stories