Kelsey
Patient-to-patient topic:
Being in a high-stress career while having Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?:
"If you listen to your body when it whispers, you won't have to hear it scream"
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Setting firm boundaries at work, staying social (even when I really don't feel like it) and understanding that these are the cards I have been dealt and I'm not going to let it take me down.
What is your best advice for another patient dealing with this symptom/ situation?:
It's super easy to get caught up in the loop of feeling sorry for yourself - if I am having a rough day and am feeling upset about having to deal with this for the rest of my life, I "schedule" a time for 10 min or so where I allow myself to feel really sorry for myself and then I move on after those ten minutes. The balance between allowing myself to feel the emotions I feel over having this disease but not living in that space has been a game-changer for me.
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.:
Looking up "spoon theory" can definitely help you understand how to balance life with such a terrible disease.
Please finish the following sentence: "Sjögren's has taught me...":
Balance! I may not be able to do it all, but I can do a lot strategically.
What are your most difficult symptoms?:
Debilitating fatigue, joint pain, interstitial cystitis, dry mouth & sensitivity to UV light
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren's has deeply impacted every aspect of my life - I have a high-stress and physically-demanding career that I have to carefully balance every single day so I don't physically (and mentally) burn out. And I have to balance that with being a wife and have some semblance of a social life. I sometimes have to opt out of family or social event from the severe body pains and that can be really heartbreaking. It can make me feel like a failure as a wife, friend, sister, aunt, sister & daughter.
How do you effectively cope with the complexity of symptoms?:
I have learned in the last few years that stress makes everything 100 times worse and I must prioritize keeping my stress levels down, especially with a high-stress career. The most effective ways I combat stress are by staying social & taking my dogs for walks with my favorite tunes on. Even if I'm in a lot of pain, I have found that slow and steady walks with my pups can help my body feel a bit better.
What do you wish people knew about your Sjögren’s?:
For most people, it is far more than "just" dry mouth and eyes - it is a completely debilitating disease for so many of us.
How do you incorporate self-care with managing Sjögren's?:
Keeping stress down - if I don't address my stress, I will not be able to keep any of my symptoms at bay. My biggest forms of self-care are staying social as much as possible and taking slow, steady walks with my dogs whenever possible.
What is your go-to Sjögren's product?:
Super sour candies for stimulating saliva and magnesium to help regulate my nervous system
What’s your best Sjögren’s tip?:
Life can still be very meaningful and productive with Sjögren's as long as you set firm boundaries and listen to your body.
Kelsey
Patient-to-patient topic:
Being in a high-stress career while having Sjögren's.
What do you wish you knew when first dealing with this symptom/situation?:
"If you listen to your body when it whispers, you won't have to hear it scream"
What are the top 3 over-the-counter products or tools you use when dealing with this symptom/situation?:
Setting firm boundaries at work, staying social (even when I really don't feel like it) and understanding that these are the cards I have been dealt and I'm not going to let it take me down.
What is your best advice for another patient dealing with this symptom/ situation?:
It's super easy to get caught up in the loop of feeling sorry for yourself - if I am having a rough day and am feeling upset about having to deal with this for the rest of my life, I "schedule" a time for 10 min or so where I allow myself to feel really sorry for myself and then I move on after those ten minutes. The balance between allowing myself to feel the emotions I feel over having this disease but not living in that space has been a game-changer for me.
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.:
Looking up "spoon theory" can definitely help you understand how to balance life with such a terrible disease.
Please finish the following sentence: "Sjögren's has taught me...":
Balance! I may not be able to do it all, but I can do a lot strategically.
What are your most difficult symptoms?:
Debilitating fatigue, joint pain, interstitial cystitis, dry mouth & sensitivity to UV light
How has Sjögren's impacted your life (either physically, emotionally, financially)?:
Sjögren's has deeply impacted every aspect of my life - I have a high-stress and physically-demanding career that I have to carefully balance every single day so I don't physically (and mentally) burn out. And I have to balance that with being a wife and have some semblance of a social life. I sometimes have to opt out of family or social event from the severe body pains and that can be really heartbreaking. It can make me feel like a failure as a wife, friend, sister, aunt, sister & daughter.
How do you effectively cope with the complexity of symptoms?:
I have learned in the last few years that stress makes everything 100 times worse and I must prioritize keeping my stress levels down, especially with a high-stress career. The most effective ways I combat stress are by staying social & taking my dogs for walks with my favorite tunes on. Even if I'm in a lot of pain, I have found that slow and steady walks with my pups can help my body feel a bit better.
What do you wish people knew about your Sjögren’s?:
For most people, it is far more than "just" dry mouth and eyes - it is a completely debilitating disease for so many of us.
How do you incorporate self-care with managing Sjögren's?:
Keeping stress down - if I don't address my stress, I will not be able to keep any of my symptoms at bay. My biggest forms of self-care are staying social as much as possible and taking slow, steady walks with my dogs whenever possible.
What is your go-to Sjögren's product?:
Super sour candies for stimulating saliva and magnesium to help regulate my nervous system
What’s your best Sjögren’s tip?:
Life can still be very meaningful and productive with Sjögren's as long as you set firm boundaries and listen to your body.