How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögrens has affected my life in every way. I don’t make many plans on the weekends so that I can recover from working and parenting all week. If I don’t rest, I will inevitably flare. My husband and I lost many social connections, but prioritizing health and family helps me manage my fatigue much better. I also had to really readjust my self-image after my diagnosis. I am a natural caretaker, and learning how to ask for support from friends and family was very hard. My ego took a hit, but learning how to ask for help with basic chores like carpooling, grocery shopping has helped me take better care of myself as well as given my family and friends some insight into my health journey. Financially, I’ve spent a lot of money trying to improve my diet and health through dietary changes, vitamins, and holistic healing.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I don’t feel alone now, and I also have great resources to share with others. Venus Williams has been a HUGE inspiration to me!
Where/who do you go to for support with Sjögren's?:
I lean most on my husband, and close family and friends. They have truly been a lifesaver for me.
Please finish the following sentence: "Sjögren's has taught me...":
To stop seeing myself as a superhuman who can do it all.
What do you wish people knew about your Sjögren’s?:
Fatigue and brain fog are real. I’m not lazy or introverted or unsocial when I choose to stay in. Giving my body and mind a chance to recover is very important.
What advice would you give to someone newly diagnosed?:
There is no one size fits all approach. Try lots of things. See what helps. Ask for support from your friends and family. Don’t give up. Sjögrens is not a death sentence luckily.
What does it mean to "thrive" while living with Sjögren's?:
I thrive when I make decisions that are best for me and my health and don’t cave in to FOMO or social pressure.
How do you incorporate self-care with managing Sjögren's?:
I see a holistic chiropractor once a week. She helps keep my nervous system and my neuropathy calm. Raynauds was really affecting me before I started.
What inspires you to keep going on hard days?:
Reminding myself that I am much healthier now than I was when I first got diagnosed. My family, especially my husband, have been a lifesaver.
What’s your best Sjögren’s tip?:
Connect with others living with Sjögrens. You are not alone. And take care of your eyes and mouth in the winter when it’s cold and dry.
How has Sjögren's affected your life (either physically, emotionally, financially)?:
Sjögrens has affected my life in every way. I don’t make many plans on the weekends so that I can recover from working and parenting all week. If I don’t rest, I will inevitably flare. My husband and I lost many social connections, but prioritizing health and family helps me manage my fatigue much better. I also had to really readjust my self-image after my diagnosis. I am a natural caretaker, and learning how to ask for support from friends and family was very hard. My ego took a hit, but learning how to ask for help with basic chores like carpooling, grocery shopping has helped me take better care of myself as well as given my family and friends some insight into my health journey. Financially, I’ve spent a lot of money trying to improve my diet and health through dietary changes, vitamins, and holistic healing.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I don’t feel alone now, and I also have great resources to share with others. Venus Williams has been a HUGE inspiration to me!
Where/who do you go to for support with Sjögren's?:
I lean most on my husband, and close family and friends. They have truly been a lifesaver for me.
Please finish the following sentence: "Sjögren's has taught me...":
To stop seeing myself as a superhuman who can do it all.
What do you wish people knew about your Sjögren’s?:
Fatigue and brain fog are real. I’m not lazy or introverted or unsocial when I choose to stay in. Giving my body and mind a chance to recover is very important.
What advice would you give to someone newly diagnosed?:
There is no one size fits all approach. Try lots of things. See what helps. Ask for support from your friends and family. Don’t give up. Sjögrens is not a death sentence luckily.
What does it mean to "thrive" while living with Sjögren's?:
I thrive when I make decisions that are best for me and my health and don’t cave in to FOMO or social pressure.
How do you incorporate self-care with managing Sjögren's?:
I see a holistic chiropractor once a week. She helps keep my nervous system and my neuropathy calm. Raynauds was really affecting me before I started.
What inspires you to keep going on hard days?:
Reminding myself that I am much healthier now than I was when I first got diagnosed. My family, especially my husband, have been a lifesaver.
What’s your best Sjögren’s tip?:
Connect with others living with Sjögrens. You are not alone. And take care of your eyes and mouth in the winter when it’s cold and dry.