Posted By Christina M on August 27, 2018

I’ve realized that this is the view of a lot of people, including many people who have the condition. “Ok, so you’re thirsty. Do you need a diagnosis to drink more water?” 

It isn’t that simple. Well, for some maybe it is. But after that experience, I wasn’t really sure where to go after my diagnosis. It wasn’t until I started having intense nerve pain in my feet that I went back to my rheumatologist, but she asked me why I hadn’t been in sooner. I shrugged. I wasn’t sick. I didn’t really think I had a reason.

I think it was 2011 when I got my diagnosis of primary Sjogren’s Syndrome. I had suspected it for a while, but the first round of testing indicated a “probably not” because the most common markers were absent in my blood. At that time, my primary care physician discouraged me from bothering to seek a diagnosis because it wouldn’t change anything. 

“You have a disease. That is your reason.”

From then on, I was scheduled every six months or so, and two things changed. First, my body started fighting me actively. Second, my rheumatologist rescued me. I had started thinking that having every single muscle in my body hurt was a normal thing. After all, as my primary care physician had said, it’s not like there’s anything we can do about it.

Except that I was wrong. My rheumatologist prescribed a “disease modifying” medication that not only slowed the progress of my disease, but also made my body stop hurting 24/7.  Then she prescribed two medications for my nerve pain, and set me up for routine ophthalmology that is necessary with one of the medications. I got medicine to help me make spit. (Say good bye to root canals!) I was offered medicine to compensate for having “poor quality tears.” (I later tried it, and it worked beautifully.)

The next time I went to see her, I said “I pray for blessings for you every single day. Thank you. Thank you!” It turns out that the things you can get used to, or at least get used to thinking of as normal, can be mitigated with good medical care. And this is why I’m writing this today. If you think you might have Sjogrens, or some other auto-immune disease, and you think there’s no point in bothering with a diagnosis, or that it’s not a “real” disease, just an inconvenience, you might be underestimating the medical field and how much better you might be able to feel.

On the other hand, maybe you are one of those who just don’t feel too bad. I hope you are. I hope you never need to be on 17 pills a day like I am. I pray that your disease never progresses to the point of interfering with your life. I still recommend that you don’t belittle yourself into avoiding the medical care you should have, by thinking you’re just being a sissy. Maybe it’s the treatment your rheumatologist offers that keeps you from becoming a hot mess of symptoms. Or maybe you will catch a new symptom early and nip it in the bud because you have an expert on your side. 

In the long run, getting appropriate treatment isn’t going to do you harm, and might well be able to do you a lot of good.

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Tags: sjogrens