Today is World Sjogren’s Syndrome Day. Most people probably had never heard of this disease until Venus Williams was diagnosed with it last year. Even then, it probably passed through minds without another thought.
Unless you’re one of the people struggling with an undiagnosed illness. Maybe reading about this strange syndrome made you perk up a little because your symptoms seem similar. Maybe it took you to your doctor who might have only heard about Sjogren’s Syndrome on passing in medical school and thinks it only has to do with dry eye and dry mouth. Maybe you got lucky and your doctor does know some things about it.
It takes an average of 6.5 years to get an accurate diagnosis of Sjogren’s Syndrome, according to the Sjogren’s Syndrome Foundation. It took me almost 10 years to be diagnosed. My complaints were of hand pain. There were days my hands hurt so badly that I would just let them lay limp in my lap because doing anything else with them hurt. My internist sent me for a nerve study where the neurologist said I didn’t have carpal tunnel as suspected but that I might consider finding a rheumatologist.
At the first visit with my rheumatologist (if you’re in Chicagoland and would like his name and number, I’ll be happy to provide it!) he spent nearly an hour asking questions. Then there was a blood draw. When I returned I discovered that I had Sjogren’s Syndrome. I am SS-A and SS-B antibody positive. Also, females in my family seem to have autoimmune disease issues.
Honestly, I was only concerned about the joint pain. My hands were the worst and what I complained about most, but most of my other joints hurt too. I wanted that pain gone. I never considered my dry eyes or mouth an issue. I thought I was “normal.”
Why am I sharing this with you? Because I know someone is experiencing the same thing and I want to encourage you to get answers. Research your symptoms. Talk to your primary physician. Talk to people you know.
How am I living with Sjogren’s? Better than some, worse than some. My dry eyes and mouth are manageable. I make sure I have plenty to drink when I eat and talk. I take a lot of medications to help improve quality of life. Some people think meds are evil; I think they let me be mobile. A few years ago I had to make a choice if I wanted to continue with constant pain. I made the choice for medication. Someone else might make a different choice.
I encourage you to be vocal and proactive in taking care of your health. Ask questions. Become informed. Do your research. Share your findings with your physician and dentist.
This is the only life you get, so you want to live it in the best way possible!