Faces of Sjogren's: Nancy’s Journey

NancyWhen I was diagnosed with Sjögren's, my first thought was…

“WHAT IS THAT?”  Like most, I had no knowledge about Sjögren's until that moment.  Now I tell people that Venus Williams and I have something in common and it isn’t tennis!  Many have heard about Venus’ experience with Sjögren’s and could relate to my illness through her.  After struggling for 9 years with a variety of illnesses, I appreciated finally having a diagnosis but was afraid of the unknown. 

My main symptoms were not dry mouth and dry eye.  I had chronic sinusitis, ear infections, swollen parotid glands and a consistently abnormal white blood count. Four months before being diagnosed, I suffered severe joint pain, stiffness, fatigue and mental fog.  I struggled to be productive after 11am and finally retired because I felt I wasn’t a productive team member anymore and was frustrated.  So were the people around me.  None of us knew my body was out of balance. 

Education is the key to identifying this disease early and getting the needed treatment.  I had one doctor tell me I was crazy and needed to see a psychologist but it was the hodgepodge of illnesses and symptoms associated with Sjögren’s. Now, I read books, talk to my doctor, research the Sjögren’s Syndrome Foundation’s website and talk to anyone who will listen.  I went through the denial to acceptance process fairly quickly.  I do my best to manage the disease and not let it manage me.  Some days are given over to the symptoms, but it beats other alternatives.

My advice is to never give up and only give in when you must.  Stay active and enjoy life to its fullest.  Identify friends and family who understand your illness and rely on them for support.  Life is a journey with many twists and turns- Sjögren’s is just one more of them along the way.  Lastly, keep faith and hope alive that a cure will be found.

- Nancy

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