I was recently made aware that April is both Sjogren’s and IBS awareness month, so I would be remiss not to write something about both of these invisible illnesses that I have! I love educating others about my illnesses because it both empowers me to just own them and accept them as my truth, and helps others become more compassionate and understanding towards those with chronic illness.
(You can read my first ever blog post, “Invisible Illnesses,” for a recap of my invisible illness as of 2 1/2 years ago (anxiety, total thyroidectomy, and Sjogren’s) and my post “What the FODMAP,” which was written after my IBS diagnosis last spring. If those interested you, feel free to browse my entire chronic illness archive)!
Sjogren’s Awareness
Let’s start with good old Sjogren’s, who I have gotten to know quite well over the past 2 1/2 years. Sjogren’s Syndrome is an autoimmune disease. Autoimmune disease are chronic illnesses in which the body’s immune system attacks healthy cells. They have no known causes and no known cures. Some other major autoimmune diseases include Lupus, Rheumatoid Arthritis, Scleroderma, Celiac Disease, IBD (Crohn’s & Ulcerative Colitis), Graves’ Disease, Hashimoto’s Disease, Psoriasis, Multiple Sclerosis, and Type 1 Diabetes.
Sjogren’s is one of the most prevalent autoimmune diseases. It affects as many as 4 million Americans, 9/10 of which are female (Sjogren’s Syndrome Foundation). You can either have primary Sjogren’s (meaning it is the only autoimmune diagnosis you have) or secondary Sjogren’s (meaning it is associated with another autoimmune disease like Lupus or RA). The defining symptoms of Sjogren’s Syndrome are dry eyes and mouth, as it primarily attacks the body’s moisture producing glands. However, other common symptoms include fatigue and joint pain, and it can potentially affect organs in the body like the kidneys, GI system, lungs, liver, etc.
Sjogren’s can be extremely hard to diagnose, as its symptoms often mimic other diseases. It takes an average of 3 years to receive a Sjogren’s diagnosis (Sjogren’s Syndrome Foundation). I was incredibly lucky to be diagnosed just 3 months from when I began seeking answers for my symptoms. Below I’ll include my diagnosis story as well as the criteria they used to determine I had Sjogren’s.
Pre-Diagnosis – Looking for Answers
The summer before my junior year of college I was working full time at the daycare where I still work. I would work an 8-4 shift, and then be asleep on the couch when my mom got home from work between 5-6. This may not seem unusual for a 20-year-old, but what about when you factor in that I was also getting at least 8 hours of sleep a night? I was far more tired that I should be.
I had also been getting sick a ton that whole year. I basically had a perpetual cold all winter, and then in the summer I had stomach virus after stomach virus. A fact that I often state with a bizarre sense of pride is that I vomited 20 times when I was age 20 (and only once was alcohol induced, thank you very much). My doctors blew me off, saying my constant sickness was due to me living in a dorm, and then me working with kids in the summer. Those are legitimate points, but my immunity was far lower than all of my counterparts.
My mom and I begged my primary care physician to run further tests to see if I had some kind of immunodeficiency that was making me get sick all the time. We finally convinced her to run some tests, and she got weird results, so she sent me to an immunologist, who ran some tests, and got some more weird results. He suspected that I could potentially have a connective tissue disease, so he sent me to a rheumatologist, who ran yet more tests.
The Diagnosis
I finally received my diagnosis of Sjogren’s from the rheumatologist. He explained that the diagnosis was based on the following factors that I exhibited:
- Elevated IgG
- Positive ANA (antinuclear antibodies)
- High RO and LA
- Positive Sjogren’s Antibody
- High SED rate
- Low WBC
- Case of parotitis (inflammation of the parotid salivary gland)
- Extreme fatigue
There is no hard and fast test for Sjogren’s Syndrome, but rather it is diagnosed based on certain clusters of symptoms. Interestingly, I didn’t develop the typical Sjogren’s dry eyes and mouth until this past fall, 2 years into my diagnosis. At that point, I started noticing my lips would get really dry and it would look like I was actually wearing lip color when I was not. My eye doctor also ran a test of my tear production (which is standard for those with Sjogren’s…it is called a Schirmer’s Test) and found that my tear production was low.
Living with Sjogren’s
The main obstacle that I have had to deal with while living with Sjogren’s is the crushing fatigue. It is unpredictable, because autoimmune diseases tend to flare. So sometimes my symptoms are well managed, and sometimes they flare up and get a lot worse. When my fatigue is bad, I may have to rest all morning, then take a nap just to be able to get through a 3-4 hour shift at work. If my fatigue is REALLY bad, I may have to call out of work (this usually only happens when I also have another sickness like a cold or virus).
I had to move home from college to deal with this disease. Eventually I began taking online courses in order to finish my undergraduate degree. (Read my post: “A Letter to Myself On The Day I Was Supposed To Graduate College“). I just recently increased my hours at work from 12 hours a week to 16 hours a week. As a very motivated and sometimes type-A person, it can be truly difficult for me to not be going to school or working full time. It can make me feel like I’m being lazy, when in reality I’m doing all that my body can handle. You lose parts of yourself when you gain a chronic illness. (Read my post: “The 5 Stages of Grief After a Diagnosis).
IBS Awareness
Ok, I’ll be the first to admit that I never took the term IBS seriously before I was actually faced with it head on. I compare it to CFS, or Chronic Fatigue Syndrome, which I previously discounted as well. In my naive mind, I used to think: “Chronic Fatigue Syndrome? Pshhh, so you’re tired sometimes. So isn’t everybody. IBS? Pshhh, so you have some tummy trouble from time to time. So doesn’t everybody.”
When I was diagnosed with Sjogrens, I realized how wrong I was about CFS when I experienced truly crushing, life-altering levels of fatigue for the first time. When I was diagnosed with IBS last year, I realized just how much gastrointestinal issues (like IBS, Crohn’s, Ulcerative Colitis, etc.) can affect your life.
IBS, or irritable bowel syndrome, affects 10-15% of the population worldwide, and it can range from mild to severe (International Foundation for Functional Gastrointestinal Disorders). Symptoms can range from gas, bloating, and pain to diarrhea or constipation (or a cycle of both). One can either have IBS-C (“C” is for constipation) or IBS-D (with the “D” being for diarrhea). I have IBS-D.
IBS is a lot more than simple tummy trouble. It can significantly affect your day-to-day life. When I was in the thick of it last year, I was so afraid to leave my house and be away from my bathroom. I made sure I knew where the bathroom was everywhere I went. I had to take a shot of Pepto Bismol every day before work just to ensure that I’d make it through my shift. I didn’t go to acupuncture (even though it could have helped!) because I was so fearful of lying on that table stuck full of needles and urgently needing the bathroom.
My worst IBS story is probably from when I visited my aunt and uncle in Florida. They took me out to lunch and I ordered the most harmless meal I could find (at that time I had no idea what my food intolerances were yet, so I was just using trial-and-error). I finished the meal and my stomach felt a little funky, so I asked them to take me home instead of walking around like we were planning to do. We didn’t make it home, because as the ride went on my stomach got worse and worse and my urgency increased. Eventually we had to stop at a CVS, whose bathroom I utilized for probably 45 minutes before I felt like I could get back in the car and make it back to their house.
Since using the low FODMAP diet to discover my food intolerances, my stomach has been worlds better. However, it’s not perfect, and especially if I do catch a little stomach virus from work, it can mess up my stomach for a good few months. I’ve had to cut out high fructose ingredients (like high fructose corn syrup, honey, agave, apples, pears, peaches, plums, asparagus, artichokes, etc.) because they are my main intolerance. Currently, I’m taking it easy on the gluten and dairy, but not cutting them out completely. Sometimes I have to weigh wether slight discomfort is worth it for some delicious, soul-stirring food.
I hope this post helped you learn a little something about IBS and Sjogren’s during their awareness month, and just more about chronic and invisible illnesses in general. Our illnesses are not who we are, but they are things we have that significantly impact our daily lives. If you have a chronic illness, please know that you are NOT alone! (And, join my FB group “The Spoonie Squad” for a little online support).
