A Letter To Sjögren's Syndrome: Here's To Thriving Not Just Surviving

July 23 is World Sjögren's Day — a day to raise awareness and donations for Sjögren's research, advocacy, and education.

A few weeks ago I put the medication I take to control my Sjögren’s symptoms in my hand, walked to my office to take a meeting, and somehow forgot to take my daily dose.

I couldn’t remember if I took it. I couldn’t find it anywhere. But if I took another dose just to be sure, I would be in agony later because too much medication is a lot on me.

14 hours later, I woke up in the middle of the night in agony. It felt like I ripped bandaids off my eyes. They were so dry. My sinuses were so dry, it made it hard to breathe. My skin felt like it was peeling off. My elbows were on fire, even if I kept my arms straight.

It was brutal trying to fall back to sleep. I tried all the tricks I know, but it was no use.

I guess I had my answer: I did forget to take my medicine.

I’m writing this for a few reasons.

1. I talk a lot about healing food can be, and how I love to explore ingredients and foods that can make my life more manageable. But at the end of the day, I need medication too. And this Substack will never go against pharmaceutical medication for that reason. Now whether or not every autoimmune patient needs pharmaceuticals is up to them and their doctor(s). But I won’t ever say you should automatically write them off.

2. It’s World Sjögren’s Day. July 23 is the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered the disease. It’s a day to recognize the disease, support and advocate for those suffering, and to raise money for research.

3. Sometimes in life, it’s all about getting through and finding ways to make your day better.

I could write a whole long letter about each of my symptoms, how some days are better than others, how I don’t remember the last day I was 100 percent ok physically and mentally, but all that’s going to do is bring my mood down.

Because, truthfully, none of that matters. It all matters how I react to my disease. Some days it definitely gets the better of me. But for the most part, I persevere.

What is Sjögren’s Syndrome? From the Sjögren’s Foundation:

Sjögren's ("SHOW-grins") is a systemic autoimmune disease that affects the entire body.

Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas.

I once told my doctor that I was given this disease for a reason. Pitying myself isn’t going to do me anything. I grieved what my life was before symptoms started showing up — the freedom I had. Maybe the reason was to raise awareness about a rare disease. Maybe it was simply because the path I was on in life wasn’t the one I was meant to be on. Or maybe it was just part of my genetic code.

I’ll likely never know. But for now, my goal is to find ways to make my life more functional.

I have a few close friends that truly know how hard this disease is on me. And quite often they’ll ask me how I am that day. More often than not, they’ll ask “ok but how are you really?” after I answer.

And the truth is, right now I’m surviving, not thriving. But I want to change that. I’ll never get rid of my dry eyes with just punctal plugs, prescription and OTC eye drops. I’ll never get rid of dry skin with loads of oil and lotion. I’ll never get rid of my dry mouth, or my dry nose, or my joint pain. But I can try to do more than survive each day.