If they catch me in the bathroom at work, I might give away a little piece of my Sjögren’s secret.

“Oh, no…” they say. “Did your contact fall out?”

I’m scrubbing away at the white film that builds up on the bottom half of my contacts, so I can’t really see them as they are staring at me through the mirror. I put my head down and focus on scrubbing. I know they are staring, but it’s all such a blur.

“No…I…” I debate how to handle this. I debate how much to reveal. I debate how to say it. “I…I just have a problem.”

I have a problem? Why did I say that? My one opportunity and all I blurt out is I have a problem?

“Hmm…” they say as they pretend to focus on washing their hands. They scurry out as quick as they can. I just keep scrubbing.

Well, one failure, but don’t worry, champ…you’ll get ’em tomorrow.

“Oh, no…” they say. “Having trouble with your contacts?”

The same routine. Every day. But usually a new person catches me in the act.

They mean well. Small bathroom talk to be friendly towards a co-worker.

“No…I…” Here’s my chance. Just say it. Just say something. “I…have an autoimmune disorder.” Well, that will get their attention. They suddenly are grabbing way too many paper towels and just keep grabbing for them as they turn to face me. They just keep wiping their hands dry, again and again. Their hands are definitely dry by now, but they feel like they have to stay. Who has the heart to walk away after that?

“My eyes just get really dry, so sometimes I can’t see that well because I get this white stuff on my contacts. It’s worse when I’m tired or stressed.”

I guess that’s enough to reveal. They don’t really understand Sjögren’s. They can’t really get it. How could they?

They smile. Sometimes they say they’re sorry, or they look sad or even just confused. One simple bathroom small-talk moment suddenly is a lot more than they expected. 

They smile and walk away. I just keep scrubbing. Scrubbing and scrubbing so that life isn’t hiding behind such a fog.

Feel Good.

There’s this picture frame that I hung up on my wall at work. It’s right by my computer screen, so I catch myself staring at it a lot. It’s simply three rectangular frames strung together by ribbon. It’s bright and cheery orange with polka dots and flowers and bright blue ribbon that loops at the top to hang by a thumb tack.

The top frame reads, “Feel good.” The middle, “Live well.” The bottom, “Be happy.” In my mind, I read it from top to bottom:

Step 1: Feel good.

I get really hung up on this one some days. In the frame is a photo of my family on our recent Southern Caribbean cruise. I felt okay on this trip, but I remember needing a vacation from the vacation. I remember getting so dehydrated from the scorching sun. I remember one night literally crashing onto the bed and slipping into a coma.

I wanted to keep up. But I just couldn’t. My body wouldn’t let me.

But what really gets me is that “Feel good.” has to be Step 1. So, if I don’t feel good then can I not go on to Step 2: “Live well.” and Step 3: “Be happy.”?

I personally think the phrase “live well” is pretty awkward. How are you living? Well.

They’re all commands, too. You must feel good. Just do it. Why can’t you just say it and want it and think it, and then it will come true?

And if I can’t get past Step 1, then do I not get to live well—whatever that means—or be happy?

All three frames are filled with images of friends and family. For whatever reason, I really like the frames. Maybe I like the idea of commanding my body to feel good. I like seeing my friends and family there to support me as I figure out what it means to live well.

And I like the idea that if I tell myself to feel good and live well, then I can definitely command myself to follow Step 3: “Be happy.”

I think I just like that the frame is simple and colorful. I bought it because it was aesthetically pleasing, but it suddenly means so much more—probably way more than the designer intended.

Feel good. The first ticket to happiness.


“Are you currently taking any other medications?”

I usually sigh after someone asks me this question. It’s usually the young nurse who is still looking at her paper when she asks the routine question. She’s in such a hurry to whip through height, weight, and symptoms that medications is just another one of the questions.

I sigh and give her the rundown about Sjögren’s.

“How do you spell that? And what is that for?” She crosses out her chicken scratch and makes every attempt to sound out the foreign words.

Once I start spelling each prescription and giving an in-depth description of what exactly each one does, she usually looks up. I say usually because it’s pretty much the same drill every time.

Just last week a doctor was actually the one questioning my medications and my condition. A doctor.

“I actually have an autoimmune disorder called Sjögren’s,” I said as I was sitting on my freezing and bloodless hands on the end of the exam table, swinging my feet as I tried to explain.

“What is that exactly? I’ve had a lot of patients asking me…you know, since Venus Williams has it,” she said. Her face was intrigued. She wasn’t caught up in my records or her notes or anything. She looked me in the eye and sat down to learn all about it.

I’m not an expert of all cases, but I’m certainly an expert on my case. I always struggle with where to start in my explanation, but I usually just start at the top of my body and work my way down. There are a lot of years to explain and a lot of unknowns to reveal, but I try to deliver it all with a smile.

It’s nice to be able to educate doctors.