When My Heart Was Trying to Tell Me It Was Sjögren's Disease

220/160.

Those numbers would stop almost every healthcare professional in their tracks. Every time someone wrapped a blood pressure cuff around my arm, I could see the look on their face. They'd check it again. Then they'd tell me I needed to go to the emergency room.

Sometimes my blood pressure was so high that I couldn't receive my scheduled treatments. Other times, I couldn't even have routine dental work because it simply wasn't safe.

At one point, I was taking six different blood pressure medications—including a weekly patch—just to try to keep my blood pressure under control.

Eventually, something happened that bothered me even more than the numbers themselves. People became accustomed to them. Instead of asking why my blood pressure remained dangerously high, they documented it, treated the immediate problem, and moved on.

I couldn't accept that.
I wanted to know why.

It was never just one disease

Living with multiple autoimmune diseases can feel like trying to solve a mystery every day.

I have lupus, Sjögren's disease, systemic sclerosis, Raynaud's phenomenon, and several other autoimmune conditions. When new symptoms appear, it's easy to blame the diagnosis everyone recognizes first.

For years, I wondered which disease was criminally responsible.

Was it lupus?

Was it systemic sclerosis?

Or was the answer hiding in plain sight with Sjögren's disease? Looking back, I realize my heart had been trying to tell me all along.

Looking back, the clues were there

As I look back over my medical history, the signs seem much clearer. I was hospitalized repeatedly with pericarditis—inflammation of the sac surrounding the heart. I underwent countless echocardiograms. I battled severe hypertension that often seemed impossible to control. I experienced inflammation throughout my body and lived with the uncertainty of not knowing what would happen next.

At the time, every symptom was treated as its own problem. Today, I see them differently.

According to the Sjögren's Foundation, Sjögren's disease affects much more than the eyes and mouth. Chronic inflammation associated with the disease can affect the cardiovascular system, increasing the risk of hypertension, pericarditis, myocarditis, arrhythmias, vascular disease, and other heart-related complications.^1,2

For years, I didn't realize that Sjögren's could play such a significant role in heart health.

I wish more people did.

Why awareness matters

One thing I've learned throughout my journey is that autoimmune diseases rarely stay in one place.

Inflammation doesn't respect organ systems.

What begins with your immune system can affect your joints, kidneys, lungs, nervous system—and yes—even your heart. That's why symptoms like uncontrolled blood pressure, chest pain, heart palpitations, or shortness of breath deserve a conversation with your healthcare team.

Don't assume they're unrelated to your Sjögren's disease.

What I wish more people knew

I also wish there were greater awareness within the medical community.

Rheumatologists care for dozens of autoimmune diseases, many with overlapping symptoms. When someone is living with multiple conditions like I am, it can be incredibly difficult to determine which disease is responsible for what they're experiencing.

That uncertainty can delay answers. It can delay treatment. It can also leave patients feeling unheard.

I've learned that one of the most important things we can do is become active participants in our own care. Be descriptive. Don't minimize your symptoms. Keep track of changes. Ask questions.

Your physicians are experts, but you're the expert on your own body.
The more information you can provide, the easier it becomes for your healthcare team to connect the dots.

The lesson I carry forward

Today, I still monitor my blood pressure closely. I keep every cardiology appointment, ask questions, and advocate for myself because I know my body better than anyone else.

If there's one lesson Sjögren's has taught me, it's this: don't ignore the symptoms that seem unrelated. Autoimmune diseases rarely stay in one place, and neither should our awareness.

For years, I was searching for answers, trying to determine which autoimmune disease was responsible for what I was experiencing. Looking back, I realize I wasn't asking the wrong questions—I just didn't yet understand how connected everything truly was.

My heart wasn't just giving me numbers on a blood pressure cuff. It was trying to tell a story. I just had to learn how to listen.

Today, I hope by sharing my story, someone else will recognize the signs sooner, ask one more question, or advocate a little harder for themselves. Because with Sjögren's disease, listening to your body isn't just important—it could change your life.