My Journey to Sjögren's Disease

At the end of 2019, I was diagnosed with my first autoimmune disease called primary biliary cholangitis (PBC). After my diagnosis, I started researching PBC to learn everything I could. That's when I learned that Sjögren's disease is the most common autoimmune disease to have with PBC, according to the PBC Foundation. Immediately I could start checking off boxes of symptoms I had.

Dry mouth, dry eyes, joint pain, fatigue - things started to click in my mind.

My Sjögren's symptoms before diagnosis

At the time, I was working in a Covid-19 ICU. I had to wear a respirator and eye wear to protect myself. That was when I really started to notice just how dry my mucus membranes felt. I remember having to run out of patient rooms because I started coughing and couldn't swallow - I felt like I was choking. I once ran out of a patient room, threw my respirator off, and drank straight from the sink because I was choking and couldn't catch myself from the lack of saliva.

I guess I always just thought it was normal to have a dry mouth. I remember in my early 20's my dentist told me my mouth was dry and that I "must be a mouth breather."

Seeing a rheumatologist

So, I dove into researching evidence-based medicine regarding Sjögren's disease. I was sure I had it. I scheduled an appointment with a rheumatologist and was first seen in August 2020. I remember that the doctor asked me what brought me in that day and I told her that I thought I had Sjogren's Syndrome. After a quick assessment, she said "I think you do too."

Deciphering the lab work

From there she sent for bloodwork. I feel like the first round was 10-12 vials of blood or something outrageous like that. She was testing me for everything she could as far as autoimmune disease goes. Once you have one autoimmune disease, it is likely you could wind up with several - they often go in pairs.

I was lucky in a way; my lab work was so severely bad that I did not require a lip biopsy for diagnosis. My SSA and SSB antibodies were both markedly high, as well as my ANA, antinuclear antibody, and my RF or Rheumatoid Factor. And if you are curious, yes, I was diagnosed with Rheumatoid Arthritis (RA) as well. By the beginning of fall 2020, I had obtained 3 autoimmune diagnoses.

The power of patient advocacy

As both a clinician and a patient living with autoimmune disease, I think the best thing we can do for ourselves is to educate and advocate for ourselves. I do not want to have several autoimmune diseases and other diagnoses, but I do want to make sure I am on the right treatment and doing everything I can to preserve my body and prevent further destruction that autoimmune disease can cause.

Sometimes we the patients know more than our providers do. I've been really lucky on my journey with autoimmune disease. I have had the privilege to be seen and heard by the majority of my care team and because of that, my symptoms were taken seriously. That's a big reason why I have so many diagnoses. My providers listened and worked together to ensure I received the quality of care that all patients deserve.