I’m not alone in living with Sjögren’s Syndrome

Last February I was diagnosed as having Sjögren’s Syndrome, a chronic autoimmune disease in which my body attacks moisture-producing tissues like tear ducts and saliva glands. Hadn’t ever heard of this disease before then, but I guess I wouldn’t have without knowing someone who has it–I’m not a doctor, after all. Don’t even play one on TV.

Since my diagnosis however, I’ve come upon some more people who have it. This feels kind of like when you finally choose your new car, feeling as though it’s unique and wonderful, and then you begin noticing many more of the same car on the road, in the neighborhood/parking lot/drive through. My friend Dannette, who lives in Arizona, knows someone who was just diagnosed with Sjögren’s a few months ago, and now of course, there’s tennis player Venus Williams, who was diagnosed just two weeks ago. I’m not feeling very special or unique anymore, dangit (pouting). Since better than 4,000,000 Americans have Sjögren’s, I guess I was never alone to begin with. It’s one of the most-common autoimmune disorders, and 9 of 10 patients are women.

Sjögren’s causes a collection of symptoms which include dry eyes and mouth, and can cause muscle and joint pain and lack of stamina and energy (which Venus and I both share, so I feel closer to her already!), as well as damage to the tissues of the eyes, mouth, stomach/digestive tract, kidneys, central nervous system and lungs.

Due to a shortage of saliva Sjögren’s patients will have difficulty chewing and swallowing at times, and low saliva production also makes dental problems commonplace. We’re also more susceptible to lymphoma. Also, a piece of dust or a hair in our eye isn’t just a temporary discomfort; tears help flush impurities and foreign objects out of the eye, helping prevent injury and infection, but Sjögren’s patients don’t have that built-in ‘flushing’ capability anymore. So a piece of dust may carry bacteria into our eye, and scratch the cornea when our eyelids scrape it back and forth over the surface. I carry eye drops, mouth spray and now nasal saline spray to mitigate the symptoms.

It’s not unusual for a Sjögren’s diagnosis to take 6 1/2 to 7 years, because the individual symptoms are easily mistaken for something else, like asthma. In fact, Venus had been misdiagnosed four years ago with exercise-induced asthma, but the asthma medications never helped her. It was only after unsuccessful treatment for asthma, combined with her enlarged and painful joints and extreme fatigue, that her doctors put them all together and discovered she has Sjögren’s.

I have no idea how long I’ve had Sjögren’s, and I’ll probably never know. I’ve been hurting and dragging my sorry, tired ass around for years, but my diagnosis back in February was the result of a very pointed problem with my parotid salivary glands: They were extraordinarily painful, and so swollen that I looked like a short John Goodman in drag.

If I saw something I wanted to eat, my parotid salivary glands would of course try to do their job and flood my mouth with saliva–and that resulted in stinging, twinge-y pain, truly a reverse-Pavlovian experience. Having had a gallstone before, I compared the sensation to the pain of a gallstone attack and guessed that I had ‘stones’ which would occasionally obstruct my salivary glands. Granted, this twinge was on either side of my jawbone, and the other was in my gut, but somehow it felt similar.

I couldn’t have imagined the pain and inflammation was due to my own white blood cells trying to kill my salivary glands.

I visited my regular doctor, who saw my unusually-square jaw and said “Oh my gosh, I’m going to get you to a specialist TODAY.” That was on a Friday, but amazingly by the end of the day I was being seen by an ear, nose & throat doctor who worked me in to her busy schedule.

She examined my mouth and said my parotid salivary glands were not obstructed, nor were they oozing pus as they would if infected (thank GOD and all that is holy). On the medical history form I’d filled out, she noted that I’m hypothyroid due to Hashimoto’s Syndrome, which is an autoimmune malfunction where my body attacked and killed my thyroid. She said she was ordering blood draws to check for Sjögren’s Syndrome, another autoimmune malfunction, and sent me home with prednisone and an antibiotic, just in case.

I went Monday for the blood draw. The lab tech, a kindly woman who’s drawn blood for me many times before to monitor my thyroid and cholesterol levels, had a bit of trouble entering the test coding; when she saw what the draw was for, she clucked and told me she was sorry. At that point, I was a bit dismayed at her reaction because I didn’t feel critically ill and had no idea what a diagnosis of Sjögren’s would mean.

Went back to see the ENT with my Pumpkin in tow, and we laughed and joked while waiting for her in the examining room. Yes, my blood showed the antigens for Sjögren’s, and also for rheumatoid arthritis. No ‘cure’ for it, just treatment of the symptoms and therapy to mitigate the disease’s effects, which of course included prednisone.

It was truly and actually a relief to know that there was something truly wrong with me. I’ve been feeling like walking garbage for a long time now, but each of my symptoms seemed commonplace and explainable by everyday causes. I attributed all my aches and pains to osteoarthritis, and my dry mouth to my relatively new job in a call center–essentially, I talked for eight hours a day, so whose mouth wouldn’t be dry?

During her Good Morning America interview a couple days ago, Venus also said that after suffering for so long and not knowing why, her Sjögren’s diagnosis was a relief. Now she can concentrate on treating her Sjögren’s effectively, and recovering from it as much as possible. I can identify with that relief.

But what then? Because now that we know what we have, we can rest easy knowing that we’re not crazy or hypochondriac; medicines can help us manage the symptoms, and we know that there will be times when we can’t do the things we used to do.

But the fact remains that we’re no longer functioning the way we used to, that there IS something wrong with us. With that knowledge comes an consciousness that we are finite and mortal and when that realization finally hits, it is a sobering, sad day–or at least, it was for me. I don’t know how Venus feels, but I can imagine that the pride and confidence she once had in her amazing body and athletic talent has taken a blow.

Sjögren’s doesn’t mean that we can’t be physically fit and happy and healthy otherwise, but it means that we will have to change some behaviors and ideas to accommodate our new physical status. I hate to use the phrase “suffering” to describe my experience because it seems lurid and hyperbolic, but that’s what’s happening: I am ‘suffering’ with this syndrome, and so is Venus, and so are the other 4,000,000 of us in the U.S. So in order to thrive again, we must learn to adapt.

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