JayLyn 37 (Diagnosed at 37)
I was a single mom for many years while navigating misdiagnosed and unmedicated sjögrens. It was so difficult, and my mental health took a dive, but I found therapy, a support system, and tools to navigate my symptoms and situation.
Please finish the following sentence: "Sjögren's has taught me..."
To appreciate the good days and rest on the bad days. To listen to my body. To show gratitude as much as I can.
What are your most difficult symptoms?
The pain and fatigue are so isolating and difficult. It's hard to get through the hard days sometimes.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
Sjögrens has changed all aspects of my life. The physical limitations are frustrating and create emotional tolls. The anxiety of what's to come tomorrow, and struggling to get through the pain and fatigue is so exhausting emotionally. Being a mother with sjögrens is a whole other level of hardship. Financially, it's a challenge because of lost time at work.
How do you effectively cope with the complexity of symptoms?
My support system is everything to me. My children, my husband, my family. I have some amazing doctors now who are in the fight with me. Having a support team is key to coping effectively.
What do you wish people knew about your Sjögren’s?
That I have Sjögrens but Sjögrens does not have me. That I still live my life on my terms as much as possible. I have had Sjögrens since I was a child, but I was misdiagnosed for decades. It's a zebra disease, and I wish people knew how important it is to make a proper diagnosis. My disease has been a constant in my life, and it helps me appreciate my life even more. I'm grateful to have a proper diagnosis and to know my disease is real.
How do you incorporate self-care with managing Sjögren's?
Moisturizing is a full-time job. So, a self-care routine is essential. I have a morning and night ritual that I never stray from. It helps me keep the dryness in check. Baths, yoga, and lifestyle changes help with the pain and fatigue. It's definitely a commitment, but it's worth it.
What is your go-to Sjögren's product?
Systane eye products for sure. And Epsom salt for the pain and fatigue.
What’s your best Sjögren’s tip?
Never give up. You are stronger than you realize and you deserve peace. Never stop trying to find a solution to your symptoms.
JayLyn 37 (Diagnosed at 37)
I was a single mom for many years while navigating misdiagnosed and unmedicated sjögrens. It was so difficult, and my mental health took a dive, but I found therapy, a support system, and tools to navigate my symptoms and situation.
Please finish the following sentence: "Sjögren's has taught me..."
To appreciate the good days and rest on the bad days. To listen to my body. To show gratitude as much as I can.
What are your most difficult symptoms?
The pain and fatigue are so isolating and difficult. It's hard to get through the hard days sometimes.
How has Sjögren's impacted your life (either physically, emotionally, financially)?
Sjögrens has changed all aspects of my life. The physical limitations are frustrating and create emotional tolls. The anxiety of what's to come tomorrow, and struggling to get through the pain and fatigue is so exhausting emotionally. Being a mother with sjögrens is a whole other level of hardship. Financially, it's a challenge because of lost time at work.
How do you effectively cope with the complexity of symptoms?
My support system is everything to me. My children, my husband, my family. I have some amazing doctors now who are in the fight with me. Having a support team is key to coping effectively.
What do you wish people knew about your Sjögren’s?
That I have Sjögrens but Sjögrens does not have me. That I still live my life on my terms as much as possible. I have had Sjögrens since I was a child, but I was misdiagnosed for decades. It's a zebra disease, and I wish people knew how important it is to make a proper diagnosis. My disease has been a constant in my life, and it helps me appreciate my life even more. I'm grateful to have a proper diagnosis and to know my disease is real.
How do you incorporate self-care with managing Sjögren's?
Moisturizing is a full-time job. So, a self-care routine is essential. I have a morning and night ritual that I never stray from. It helps me keep the dryness in check. Baths, yoga, and lifestyle changes help with the pain and fatigue. It's definitely a commitment, but it's worth it.
What is your go-to Sjögren's product?
Systane eye products for sure. And Epsom salt for the pain and fatigue.
What’s your best Sjögren’s tip?
Never give up. You are stronger than you realize and you deserve peace. Never stop trying to find a solution to your symptoms.