Patient Blogs | Rheumatoid Arthritis
My Sjögren's Experience
photo of woman waiting in exam room

I have Sjögren's (pronounced “show-grins”). It’s a common, systemic autoimmune disease. It frequently affects people with other autoimmune diseases, including (often) rheumatoid arthritis. I wish I had known that before I spent 7 years with unexplained, sometimes debilitating symptoms.

I had to fight for my Sjögren's diagnosis. I’m not wired to fight. I hate conflict. My doctors were understandably focused on my RA, and I respect doctors. I don’t like to offend people, especially when I rely on them for my health care. I’m not a timid person, but it’s still not easy to overcome a lifetime of acculturation against women making waves.

For years, I experienced stabbing pains in my face and torso. At worst, it felt like someone had a voodoo doll of me that they stabbed with a hot needle at random intervals. I would suddenly and inexplicably gasp, which was confusing for other people, and mortifying for me. Each episode was a shocking and short-lived assault, and I never knew when it was coming.

When extensive testing didn’t reveal a cause for my pain, doctors hinted unsubtly that my problem might be psychological. I was repeatedly offered anti-anxiety medication. That would be great if I suffered from anxiety, but I do not. I wasn’t seeking relief from my feelings about the pain. I was seeking relief from the pain.

Doctors variously minimized, dismissed, and disregarded my symptoms. This made me second-guess my own experience. It made me feel like a whiner. It made me feel scared, helpless, and alone. Finally (luckily), it made me determined. Determined enough to start researching and demanding the tests that ultimately led to a Sjögren's diagnosis and somewhat helpful treatment.

Sjögren's doesn’t always present this way. It can be relatively mild. It can also be deadly serious. It can affect vision, hearing, kidneys, lungs, etc. I have a type of small-fiber neuropathy. It’s less common than some Sjögren's-related issues, but it’s not so unusual. I’m dismayed to think how many people are suffering this very moment with severe neuropathic pain salted with the indignity of being patronized and disbelieved, simply because their doctors don’t know about this Sjögren's manifestation. Consider that my public service announcement.

Sjögren's is tricky to diagnose. Symptoms vary from person to person, and there are other, more common causes for most of them. Even so, it shouldn’t have been so hard for me to get a diagnosis. It’s one of the most common autoimmune diseases, right up there with RA in prevalence. Surprised? So was I.

Why have most people never heard of one of the most prevalent autoimmune diseases? Why does it take so many years to be diagnosed in some people? Could it be because some of the most common symptoms are subjective (pain, fatigue), and because 90% of people with Sjögren's are women?

Our medical system does better with symptoms that can be promptly measured or seen. It also does better with men. Subjective symptoms in women are often met with skepticism and frustration. Doctors want to solve problems. When my problem proved hard to solve, my doctors wanted the problem to be in my head. It was easier that way. For them.

Of course, I don’t know what my doctors were thinking. I just know what they said and did. I just know how it felt to be on the receiving end of their health care. When tests came up empty, I could almost see them metaphorically scratch their heads, shrug, and move on in search of easier problems to solve.

Medicine evolves. Many conditions that were once deemed psychological are now known to have physical bases (epilepsy, migraine, endometriosis). I expect someday the roots of the pain and fatigue that so often accompany autoimmune diseases will be better understood and treated.

In the meantime, I want to encourage women with symptoms that aren’t easily explained or that mysteriously come and go. You know your own experience. Hold on to it. Trust yourself. Don’t let others’ doubt trigger doubt in you. Just because your experience is hard to explain doesn’t make it untrue. Tell doctors your symptoms, then tell them again – even when they can’t offer solutions. There may be solutions later.

Our health care experiences take place on a continuum, both personal and collective. The more you speak your truth, the more hope there is for proper treatment for you. The more we all speak our truth, the more undeniable the chorus of our voices will be, and the more likely it will spark medical progress.

Learn more about Sjögren’s here.

P.S. April is Sjögren’s Awareness Month.

 

 

 

Photo Credit: The Good Brigade / DigitalVision via Getty Images

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Gillian Freney

Gillian Freney

Diagnosed since 2010

Gillian Freney is a writer and editor. Her passion for clarity in health communications is both professional and personal. She has written on behalf of public health and human services agencies for many years. She has also lived with rheumatoid arthritis since 2010. Gillian sees firsthand that everyone benefits when patients and doctors share a common understanding. She knows reaching that common understanding is harder than it looks. Gillian lives with her family in Portland, OR.

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