Why a Sjogren's Syndrome Diagnosis is so Hard to Get

In 2017, I got the answers to the puzzle I’d been trying to put together since I was a kid. I was diagnosed with Sjogren’s Disease.

Fatigue was an ever-present load I carried since childhood that I couldn’t explain. I had other symptoms pop up here and there, but nothing seemed connected and doctor after doctor gave me a band-aid remedy for the symptom, or would just shrug and say “it must be stress”.

When I was in graduate school, I took a class called “Psychoneuroimmunology”, or PNI. One section of that class was all about autoimmune disorders. Fatigue kept popping up in the diagnoses we learned about. I made mental notes of how my symptoms compared to each and every diagnosis. One by one I crossed them off the list in my head.

Lupus? Nope.

Rheumatoid arthritis? Nope.

On and on it went.

Then we got to this one called “Sjogren’s Syndrome”. Check, check, check, check. It started to seem like I had my answer. Then our instructor said “the hallmark symptoms are dry eyes and dry mouth”. She went on to say something to the effect of “If you don’t have those, you don’t fit the criteria”.

If you want to know what I learned from researching my Sjogren’s Syndrome Diagnosis, click here: “You Mean it isn’t in My Head? What Sjogren’s Syndrome and What You Can Do About It“.

My mood instantly deflated. I was so sure that was going to be the answer until she got to the part about dry eyes and mouth. Now, I struggled with contact lenses, but had no idea why.

I had some weird dental issues despite taking good care of my teeth, and didn’t think it made sense but my dentists never questioned it.

As far as I knew, my eyes and mouth were “normal” because they’d been the way they were for as long as I could remember. They seemed ok, I thought, so I eliminated Sjogren’s in my mind.

Not too long after that, I had a doctor’s appointment and complained of my fatigue again. The PA, or doctor (I can’t remember) ordered labs and I had my blood drawn. That was that and I figured “of course, nothing”.

At a later appointment the doctor casually informed me that I had something called an elevated “sed rate” and that someday I will probably have an autoimmune disorder. “I’m sorry to tell you that”. I was stunned that 1) something came up that made sense and 2) nobody bothered to tell me at the time or investigate further.

Years went by, and still no definitive answers. Talk about a mind job. To me, all signs pointed to “something is wrong”. But all the signals I got from the medical community was that it was “in my head”. Way to lift that stress, huh?

How embarrassing. I was a psychologist who couldn’t even make herself feel better by using stress management techniques, exercising, and eating a highly nutritious diet. Supposedly, according to gobs of research, I was doing all the things that should make me feel on top of the world.

I worked my butt off trying to “lifestyle my way” into feeling “normal”. The harder I exercised, the faster and harder I crashed. I stayed thin, so my weight wasn’t the problem. Why wasn’t it working, for God’s sake???

Finally in 2017, my stress was extremely high, so of course my symptoms were much worse. At my regular physical, I brought a list of symptoms with me. My doctor diligently listened and addressed each thing. But then when we got to the fatigue, she started going toward “it must be depression”.

Thankfully, I had the wherewithal to remember the elevated sed rate from years in the past. That got her attention. After my blood draw, I got a call that they were “sorry” to tell me I had an autoimmune disease and they wanted me to come back for a follow-up.

I say “sorry” in quotes because to me, it was good news. All I could think about was “I WAS RIGHT”.

At my follow up, the P.A. informed me I had tested positive for “Sjogren’s Syndrome”, which she admittedly knew nothing about. Testing positive meant my blood contained autoantibodies – ANA and SSB. She referred me to a rheumatologist who would explain.

At my rheumatologist appointment, I was just so happy to have an answer I didn’t pepper him with questions, that in hindsight, I should have. I came away from that appointment with a photocopied pamphlet that looked like it was from the early 2000s and a prescription for “Pilocarpine” which was to help me produce more saliva and tears, and “Meloxicam” for joint pain. No explanation of side effects or long-term complications. I figured I’d just read the information the pharmacy gives me.

Even though I didn’t think I had dry eyes and mouth, I took the pilocarpine. It made me sweat up a storm and my mouth water like crazy. Didn’t touch the fatigue or any other symptoms. The meloxicam made a huge difference for my pain.

It just seemed like there had to be more. I then started the journey of researching the disease and found quite a bit of information that said “dry eyes and dry mouth, oh, and fatigue & joint pain are also issues”. Seriously, wasn’t there any more to it?

My training and experience as a “health psychologist” reminded me how important patient education is. BUT, it’s also important to remember that patients don’t need to know every.little.detail about the medical complexities of a diagnosis.

There is a sweet spot between simplicity and depth. Too little leaves a patient with unanswered questions. Too much can overwhelm and leave someone feeling like they still don’t understand but are afraid to ask too many questions for fear of looking stupid.

This is why I set out to provide that patient education to others who were just diagnosed and had no earthly idea what this thing called “Sjogren’s Syndrome/Disease” is (not even knowing what the heck to call it).

Those of us who finally had an answer to all those seemingly unrelated symptoms we’ve been experiencing for far too long still needed more. Many of us are still left feeling like we don’t know what’s going on. Not understanding why it took so long for someone to put the puzzle pieces together. They’re doctors, right? Shouldn’t they know this stuff?

Hearing about this medication, that medication, and not knowing if anything actually works. Not getting real relief and having those feelings of doubt kick back in. Maybe I don’t really have it and it is in my head after all?

Wanting to know if there is anything out there they can do to feel even just a little bit better. That’s what this is all about, after all. Just.feeling.better.for.Pete’s.sake. Feeling like they do have a little bit of control over what goes on in this obnoxious body.

What if there was something people could pick up and get quick answers to different questions that they have without having to sift through what they don’t really want or need to know? A pamphlet doesn’t cut it. It needs to be more in-depth than one of those.

What if they could grab it and refer to it whenever they wanted to remember something? The internet isn’t that easy – we have to find where we found the information and weed through it to find that one little answer.

I wrote “You Mean it isn’t in My Head?” to provide that handy book that’s just the right size. Not too little to feel like you didn’t get your questions answered, but not so big that you feel like you should be awarded a certificate of completion for reading it. Small enough to grab and find the answer you’re looking for, then put it back down.

My goal was to give you answers to the first, most pressing questions (for many of us).

Why it took so long to get a Sjogren’s Disease diagnosis.
What it takes to be diagnosed with it.
What the hallmark Sjogren’s symptoms are and what the additional symptoms from its complications can be.
What the common routine blood tests mean.
Why your doctor may have prescribed a particular treatment instead of pulling out the big guns right from the start.
What you can do to give your body its best chance to respond well to the treatment your doctor prescribes.

To get those answers and not a bunch of mumbo jumbo, get “You Mean it isn’t in My Head? What Sjogren’s Syndrome is and What You Can Do About It“.