How has Sjögren's affected your life (either physically, emotionally, financially)?:
I was diagnosed with Sjögren’s in my mid forties soon after I began to experience dry eyes and mouth as well as fatigue. At age fifty I experienced forced retirement from my position as a registered nurse because I had used up all of my paid time off after surgery for back to back rotator cuff repairs. Other physical issues related to Sjögren’s over the years had also eaten into my accumulated sick leave benefits. My position in a large medical school as an RN in the Dept. of pediatrics for 32+ years came to an abrupt and sudden end mandated by HR. No problem they said. You can draw short term disability then file for SSDI. You’ll be fine. Have your office cleaned out by 5:00 today! I was not able to fight back the tears. Emotionally I was devastated after a long career filled with knowledge that still needed to be shared for the well-being and care of babies born prematurely and their parents who needed training on how to care for them. At age 50, I had a lot left to give but Sjögren’s and the prevailing culture that anyone with a disability is a company liability and waste of resources, cut that short. I didn’t know what to do with my time and I had to begin to redefine myself. It took a major toll on my self esteem and I felt somewhat worthless and depressed. To this day, I just turned 72, I still have unresolved feelings of disappointment and resentment to deal with.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I joined the Sjögren’s Foundation and connected with a local Sjögren’s support group led by another RN and gained a plethora of knowledge to help deal with symptoms and learn treatment modalities. Sharing with others similarly afflicted with this disease was a godsend to my mental health. I attended conferences and shared information with my physicians who had little knowledge of Sjogren’s in that point in time. The work of the Sjögren’s Foundation has made leaps and bounds in the training of medical personnel including dentists since I was diagnosed.
Where/who do you go to for support with Sjögren's?:
I keep up with the literature about Sjögren’s but my local support group disbanded and I’ve not been able to find another one. My family provides a great deal of support as they have seen and learned first hand how my life is affected by this disease process.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me to take better care of my health. For years I took care of others as a professional RN and often neglected to address my own needs. I learned to say “no” instead of taking on new projects and responsibilities that I know would only drain my strength and decrease the quality of my life.
What do you wish people knew about your Sjögren’s?:
I wish my loved ones and friends could truly understand what I go through every single day of my life. I never feel fully rested and it’s frustrating to have to acknowledge my limitations and to miss out on activities because I’m just too darn tired. I wish they truly understood that my whole body is affected by this disease and that I often hide how I feel because frankly I loathe being a complainer. I hate relying on others for help when I was always the one everyone depended on at home and at work when someone else was in need.
What advice would you give to someone newly diagnosed?:
My best advise to someone newly diagnosed with this autoimmune disorder would be to take care of your physical and mental health needs. Learn all you can about Sjögren’s because you may need to help some of your medical providers in order to get the best care that you need in order to thrive with this disease. Seek out a support group because only someone with Sjögren’s can know what you’re going through.
What does it mean to "thrive" while living with Sjögren's?:
To thrive and live your best life with Sjögren’s you must learn this disease process and do everything you can to mitigate its effects. Acknowledge that you have a chronic disease and determine that you will enjoy your life in spite of it.
How do you incorporate self-care with managing Sjögren's?:
In caring for myself and managing this disease I try not to overdo on days that I have more energy. I have learned that If I do too much one day I pay for it for several days afterward. The “spoon theory” applies here. Following up with medical appointments are extremely important and I have a family doctor, a rheumatologist, an ophthalmologist and a dentist that I see routinely.
What inspires you to keep going on hard days?:
We all have difficulties in life and I try to keep a positive attitude in general. My faith in God keeps me going and my spirituality is the most important thing in my life along with family.
What’s your best Sjögren’s tip?:
My best tip in dealing with Sjögren’s, besides the usual ones, is to recommend that you have a daily routine and to not neglect to exercise and stay as active as you possibly can. I find this becomes even more important if I want to continue to thrive and age well.
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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)?:
I was diagnosed with Sjögren’s in my mid forties soon after I began to experience dry eyes and mouth as well as fatigue. At age fifty I experienced forced retirement from my position as a registered nurse because I had used up all of my paid time off after surgery for back to back rotator cuff repairs. Other physical issues related to Sjögren’s over the years had also eaten into my accumulated sick leave benefits. My position in a large medical school as an RN in the Dept. of pediatrics for 32+ years came to an abrupt and sudden end mandated by HR. No problem they said. You can draw short term disability then file for SSDI. You’ll be fine. Have your office cleaned out by 5:00 today! I was not able to fight back the tears. Emotionally I was devastated after a long career filled with knowledge that still needed to be shared for the well-being and care of babies born prematurely and their parents who needed training on how to care for them. At age 50, I had a lot left to give but Sjögren’s and the prevailing culture that anyone with a disability is a company liability and waste of resources, cut that short. I didn’t know what to do with my time and I had to begin to redefine myself. It took a major toll on my self esteem and I felt somewhat worthless and depressed. To this day, I just turned 72, I still have unresolved feelings of disappointment and resentment to deal with.
How has connecting with the Sjögren's community or others living with Sjögren's Disease affected your journey with SjD?:
I joined the Sjögren’s Foundation and connected with a local Sjögren’s support group led by another RN and gained a plethora of knowledge to help deal with symptoms and learn treatment modalities. Sharing with others similarly afflicted with this disease was a godsend to my mental health. I attended conferences and shared information with my physicians who had little knowledge of Sjogren’s in that point in time. The work of the Sjögren’s Foundation has made leaps and bounds in the training of medical personnel including dentists since I was diagnosed.
Where/who do you go to for support with Sjögren's?:
I keep up with the literature about Sjögren’s but my local support group disbanded and I’ve not been able to find another one. My family provides a great deal of support as they have seen and learned first hand how my life is affected by this disease process.
Please finish the following sentence: "Sjögren's has taught me...":
Sjögren's has taught me to take better care of my health. For years I took care of others as a professional RN and often neglected to address my own needs. I learned to say “no” instead of taking on new projects and responsibilities that I know would only drain my strength and decrease the quality of my life.
What do you wish people knew about your Sjögren’s?:
I wish my loved ones and friends could truly understand what I go through every single day of my life. I never feel fully rested and it’s frustrating to have to acknowledge my limitations and to miss out on activities because I’m just too darn tired. I wish they truly understood that my whole body is affected by this disease and that I often hide how I feel because frankly I loathe being a complainer. I hate relying on others for help when I was always the one everyone depended on at home and at work when someone else was in need.
What advice would you give to someone newly diagnosed?:
My best advise to someone newly diagnosed with this autoimmune disorder would be to take care of your physical and mental health needs. Learn all you can about Sjögren’s because you may need to help some of your medical providers in order to get the best care that you need in order to thrive with this disease. Seek out a support group because only someone with Sjögren’s can know what you’re going through.
What does it mean to "thrive" while living with Sjögren's?:
To thrive and live your best life with Sjögren’s you must learn this disease process and do everything you can to mitigate its effects. Acknowledge that you have a chronic disease and determine that you will enjoy your life in spite of it.
How do you incorporate self-care with managing Sjögren's?:
In caring for myself and managing this disease I try not to overdo on days that I have more energy. I have learned that If I do too much one day I pay for it for several days afterward. The “spoon theory” applies here. Following up with medical appointments are extremely important and I have a family doctor, a rheumatologist, an ophthalmologist and a dentist that I see routinely.
What inspires you to keep going on hard days?:
We all have difficulties in life and I try to keep a positive attitude in general. My faith in God keeps me going and my spirituality is the most important thing in my life along with family.
What’s your best Sjögren’s tip?:
My best tip in dealing with Sjögren’s, besides the usual ones, is to recommend that you have a daily routine and to not neglect to exercise and stay as active as you possibly can. I find this becomes even more important if I want to continue to thrive and age well.
Click Here to Return to Stories
Click Here to Learn More About Sjögren's Awareness Month