My Silent Struggle with Sjögren's Syndrome: Getting Diagnosed and Managing the Symptoms
Updated: Feb 16
I want to start off by saying that this blog will contain images that may make people uncomfortable, or be triggering to some. This is a very vulnerable subject for me, and I intentionally haven't shared my struggle with it until now because I've dealt with a lot of embarrassment and shame associated with these images for years. So please remember to be kind and try to be understanding as I share this fragile piece of myself.
What is it?
Sjögren's syndrome (pronounced SHOW-grins) is a lifelong autoimmune disorder that impacts the amount of moisture produced by the secretory glands in the body.
There are two different types of Sjögren's syndrome:
Primary Sjögren's syndrome develops on its own, not because of any other health condition.
Secondary Sjögren's syndrome develops in addition to other autoimmune diseases like rheumatoid arthritis, lupus and psoriatic arthritis.
The Symptoms
The symptoms are different for everyone, but the two most common are extreme dry eyes and dry mouth, which I thankfully don't have either of. People can also experience one or more of the following:
Joint pain, swelling and stiffness
Swollen salivary glands — particularly the set located behind your jaw and in front of your ears
Skin rashes or dry skin
Vaginal dryness
Persistent dry cough
Prolonged fatigue
Sjogren's syndrome usually starts by attacking the secretory glands but has been known to damage these other parts of your body over time:
Joints
Thyroid
Kidneys
Liver
Lungs
Skin
Nerves
I'm considered early in my diagnosis, but currently my only symptoms are extreme pain on my tongue, joint pain, swelling, stiffness, and prolonged fatigue.
My Experience
A few years ago, I had a cavity filled at my dentist. In the days following my procedure I noticed that I was getting a spot that looked similar to an ulcer on my tongue. It was increasingly painful and as the days went on I noticed that one spot turned into two, and two into three. I also noticed the spots were "moving" around on my tongue. They weren't just staying in the same spot even within the same day. They were painful, so I went back to the dentist and told her what was happening. She said she "really wasn't sure, but they looked like hives that could have been triggered by the trauma to my mouth (the filling) and it will eventually go away."
Seeking Help
The spots would come and go, and at times they would be barely noticeable, but other times I couldn't even speak properly because the way my teeth touched them would cause unbearable pain. I slowly started to notice what would irritate them, sometimes to the point of bleeding. I eventually had to cut out anything that was salty, sour, extremely sweet, or spicy. I noticed if I kept my diet bland the pain was lessened. I lived like this for months before seeking medical help.
I went to urgent care several times over the course of the next couple months when the pain became overwhelming. One visit wasn't optional after Andy witnessed me crying while eating dinner. During these trips to urgent care, I endured a nurse rolling her eyes at me after telling her why I was there, judgmental looks as I told them I was married and they swore it was an STI (which it obviously wasn't), and a bunch of suggestions for home remedies or over the counter allergy medications. Many people tried to tell me it was geographical tongue, and that there is no treatment for it. Each time I left feeling more confused than when I went in, and without a diagnosis or next steps that gave me any sort of hope.
Finally, I made an appointment with a family doctor. I told her my symptoms and when I saw how interested she was I cried, right there in the office, because for the first time I felt like someone cared about the hell that had become my everyday life, and was invested in helping me stop it. She was engaged the entire time, and asked soooo many questions. I was in the room with her for an hour. She said it sounded like my body was attacking itself which led her to order tons of blood work.
We ruled out the big C, thank goodness, and she ordered tests for a lot of autoimmune conditions including Sjögren's syndrome, but it came back negative. The only red flag that we both clung onto as a possibility of a diagnosis on the horizon was that my ANA (antinuclear antibodies) test came back positive and was high enough to be concerned about. She referred me to a Rheumatologist that I had to wait 3 months to get into.
The day of my appointment came and I was thrilled and terrified. The thought that I may get an answer and not have to live with this chronic pain made me so excited, but I was terrified of what the answer might be, or what that answer could mean for the future. What if the answer was that they knew what it was, but I was going to have to live with this forever? I don't think I can do it. My mind was racing, as I opened the door to the Rheumatology office. I get called back and talk to the Rheumatologist. I tell her everything I've been through and show her pictures while she stares at me with a blank cold look on her face, and when she finally responds, she's extremely dismissive. She says things like,
"This isn't an autoimmune condition."
"People have positive ANA all the time."
"I see people with much worse."
"I don't know why primary care sends people to us just because of a positive ANA test."
"I'll go ahead and run the extra blood work since you've come all the way here."
"I'd be shocked if anything comes back on the bloodwork."
As if I wasn't struggling with enough, I now felt like I was bothering the one person I thought may have answers, and she's invalidating my entire experience. She has access to order more specific tests for autoimmune conditions than my family doctor. So she did, and guess what...I have Primary Sjögren's syndrome. Also, in case you're wondering when I went back in for the follow up, instead of apologizing she just says, "Well you do have it, but it could be a lot worse. I've never seen anyone with Sjögren's Syndrome have a tongue that looks like yours." She told me that I'll continue to have flare ups no matter what I do and to use a mouth rinse, and see a dentist regularly since I have less saliva to wash away bacteria that could cause cavities.
This is how I know that she didn't listen. Remember when I said the symptoms are different for everyone? I don't have issues with my saliva, or with dry eyes (knock on wood) it is only causing pain on my tongue. Moral of this part of the story? Doctors are people too. They are wrong sometimes, they have bad days, they aren't always kind, and their single opinion is NOT the end all be all! Below are a few photos of how it can look when I'm having a flare up.
Desperately Searching for Relief
There was a moment after my family doctor ran my bloodwork that she thought the positive ANA could have been linked to Lupus, and this sent Andy into overly concerned husband mode. Many autoimmune conditions are extremely diet sensitive, something we found by doing our own research. So he made the call that our entire household was cutting ALL fast food from our diet. "If there is a drive through, we aren't eating there," he told the kids and I. So, from that June day we have only snuck to Chick-fil-a once. If we want to eat out, we go to a sit down restaurant that has better quality food, and we don't even do that often. Within two weeks there was a NOTICEABLE difference in the flare ups and level of pain I was dealing with in my tongue.
This sparked an obsession. Could I eliminate other things that would help me to be pain free? This is when I started looking into food more seriously and the chemicals we were consuming in "healthy" foods. I discovered The Food Babe, Flavcity, and Bobby Parrish's "Bobby Approved" App and it changed my LIFE! I educated myself on the harmful chemicals that are in foods we ate daily. Andy and I went through our cabinets and threw away everything that wasn't "Bobby Approved" and haven't looked back.
I haven't ever considered myself a small girl and I attributed a lot of the body aches and pains I had dealt with for years to the fact that I was overweight, and aging. I had just accepted these pains as something we all went through. I was wrong.
After a month of eating ONLY things that were free of these terrible chemicals, and eating at home much more often, which unintentionally resulted in a lot less gluten (which turns out is TERRIBLE for anyone with an autoimmune condition). My aches and pains were GONE! Like gone gone! I could move my hips like never before, and it felt like I had turned back the clock 15 years. I know it sounds so dramatic, but when you experience it...it's just insane. My tongue, on most days, is ulcer free and I just feel so much better. I still have to stay away from my beloved Redhot, give up Sour candy, and go easy on the salt but I found a way to manage my pain. Not only in my tongue, but to free me of limiting body pains I didn't even know were related to my diet.
My First Flare Up After Relief
All things were going well. I had lost 26 lbs, freed myself physically, and stopped the pain in my mouth from simply eating at home and eliminating chemicals all in 4 months. All of this from my own research. NONE of this help regarding my diet came from a medical professional that specializes in autoimmune conditions. It still blows my mind.
Then fall break came. My kiddos were out of school and I was so excited for ALL of the fall traditions and activities that I had planned. I work form home, and and don't really have to leave my house for much except when I go out with friends, which is a rare occasion. I have bougie friends okay, so we always go somewhere that I can get decent food! So this was the first time since I had discovered my new way of life that I was out of the house most days and ripping and running. Time had not been my friend in remembering just how how much pain I was enduring prior to making these lifestyle changes. I was living it up, eating pizza, cinnamon rolls, ice cream, and vegan nachos that undoubtedly were a chemical concoction, with my babies thinking we would get back to our routine once they went back to school and we were done creating these amazing memories.
Well, after about 3 days in a row of eating total crap, my body SHUT DOWN. I woke up feeling like I was recovering from a serious surgery. My entire body hurt. My back and neck were so stiff from the inflammation that I couldn't turn my head or bend over without support. Normally, I'm a person that finds it impossible to nap during the day and will jump up after about 5-7 hours of sleep, but found myself sleeping for 12-14 hours a day only to wake up feeling like I hadn't slept at all. My tongue was a burning swollen mess, and I was nauseous at the thought of eating. I went three days with eating mainly applesauce piled with cinnamon and drinking water to help relieve the inflammatory war happening inside my body. Today is day 4, and I'm finally able to move without wanting to cry. I haven't showered in 3 days and I'm still finding it hard to get enough sleep to feel rested.
Experiencing this has been awful, but also confirms that what I've been doing and the lifestyle changes I've made are not only working but necessary to my well being. All of the comments about me being extra, dramatic, or high maintenance for eating the way I do now will no longer go past my ears. I know what I have to do to feel good, and I won't feel bad for doing it. Below are photos during my most recent flare up.
The Symptoms Not Listed
So obviously I've went into pretty good detail about the physical symptoms that I struggle with, but lets talk about the other part of the equation that no website has talked about, and no doctor prepared me for. Isolation and the mental battle are such real things that plague me on a regular basis.
Isolation
You don't realize how heavily traditions, celebrations, and even love is connected to food. How much eating is emotional just as much as it's biological until you have overwhelming restrictions on what you can consume. It's so isolating when you're whole family is eating your aunt's delicious mac n' cheese and you can't partake, you have to bring your own expensive ass food to the family cookout, only to be made fun of, or your kid wants you to go on an ice cream date with them and you can't eat the ice cream. I loathe having to explain that I love certain foods, and it's not that I don't WANT them, but that I have a condition that keeps me from eating them every time I'm offered something and politely decline.
I could go on and on, and as I'm writing this, I hear how much of a first world problem it is, but I would be doing anyone battling this a disservice if I didn't talk about it. I often feel like I'm on the outside of a glass box, looking in on everyone who is free to make choices about what they eat, and I don't have that same freedom. Yes, that's it. It's like having a freedom taken away, and if I dare decide to try to access that freedom I'll be punished by experiencing physical pain for days on end. I know life's not fair. I'm just sharing.
Mental Battle
You know when you're on a diet and you just want a cheat day? It's okay to have that cheat day, you'll live. Nothing terrible is going to happen and you got to enjoy life. Win-Win. Well there are no cheat days here. #nodaysoff from these lifestyle changes that I've made. There are severe consequences if I do. Imagine not being able to have ONE single off day. One day where you don't have to worry about the thing that looms over you every day. There is SO MUCH that I can't eat that it's almost unrealistic, but it has to be my reality.
When I had this flare up it made me feel so disappointed in myself for being so ungrateful that I finally found a way to manage the pain and then completely disregarded it by CHOICE. All I kept thinking was "You chose to be in pain.""You knew this would happen." "You chose this so stop whining about it." It's so easy to say,"why don't you just not eat the foods that cause it to flare up?" I can't explain the mental strength it takes to stay disciplined without one single day to breathe.
This doesn't include the struggle with the way my tongue looks. When it's noticeable, I find myself extremely self-conscious about it. I'll cover my mouth when I laugh, or try to not open my mouth as much when I talk. I use filters on social media that blur it, or edit myself out of a photo where it's visible. I really just wish that people knew that this has nothing to do with my dental hygiene, and that I'm very particular when it comes to my skin and teeth so this is a condition that has nothing to do with lack of self care.
What I Would Appreciate, and What to Avoid
I would appreciate some grace. As with any autoimmune condition it's day by day. One day I could be feeling on top of the world and pain free and then the next day I feel like I've been hit by a semi, even when I'm eating the right things! One thing that I think I've proven is that if I say I'm going to be somewhere or do something...I do it. So, if I do something a little out of character just extend a little grace. It may be an off day for me.
I often find myself in a position of support and I am in a space where I could really use some right now too. I would appreciate those close to me just checking in from time to time. What I would prefer not to happen is for people to feel sorry for me and look at me like I'm living less of a life. I have a great life; I'm just learning to navigate it in a new way. I'm very blessed and I would be thankful if you find yourself on the other side of a dump session with me, know that I KNOW I'm blessed, but sometimes the pressures get the better of me. Just know I'm not a negative person.
If you made it all the way through this post, thank you. I hope that you can use this information to either spread to others, help yourself, or be a better friend to someone struggling with an autoimmune disease. Be kind. Live Life. Extend Grace.
Just my thoughts,
