The Weird Thing I Don't Like to Talk About

I remember clearly what my doctor said to me when he gave me the diagnosis I’d been waiting for nine years to hear.  He said, “Your blood is weird. You’re weird.”  It was a deep relief to know that the weirdness wasn’t in my head. It was official that I had an autoimmune disease called Sjögren’s Syndrome, and it is weird.

This past week has been spent being weird. Last weekend was tied up in volunteer activities one of which was for the Sjögren’s Syndrome Foundation helping them raise awareness and funds for research. I’ve been feeling more and more run down lately so after a busy weekend, I crashed pretty hard.

On Tuesday of this week, I was lying in bed with aching joints, an aching head, a fever, and lethargy. I vaguely remember my boyfriend asking me if I was going to work. Then, I remember waking up two hours later. I spent a great deal of the day in a stupor, amazed at how the clock seemed to zoom forward every time I looked at it. 

I went to work on Wednesday, because there were things that absolutely had to be done at the office. It was like a productivity death march as I dragged myself through each consecutive item on my checklist. The headache and fever were coming and going; I was exhausted all day. I wish there were a funny story to tell about being at work while I felt like death, but I try to keep outsiders in the dark on this. Hopefully, they just thought I looked a little tired and wondered why I was so quiet. I can’t let them know that zombies do exist.

I was worried about whether or not I would be able to work the rest of the week.  You see, this happens every once in a while: I start wearing down during the course of the week and end up spending my weekends resting up for the next work week rather than doing what needs to be done at home. This used to mean that I would have to wallow in a dusty, disorganized house with no laundry until I felt better, whenever that would be. It’s bad enough that having this disease sometimes means giving up quality of life just to keep my job, but that’s not even an option anymore. Things die when unattended on a farm.

You would be right in wondering why I would take on the responsibilities of a mini-farm when I know I have these debilitating disease flares. In my own defense, I’ll say that one reason for wanting a garden and livestock is to see if I can improve my overall health with more physical activity and more control over what I’m eating. It’s my way of fighting a disease that doesn’t have a cure. It’s also my way of maintaining my self-image as a productive person, and deluding myself that I am not sickly. I want to be Mary Lennox from “The Secret Garden” or at least Colin Craven rising from my sick bed through the power of fresh air and exercise. Besides, no one wants to hear excuses about why I can’t write a report today or or go to the grocery store; so what difference does it make if I add cleaning the brooder to the list of things I will force myself to get done.

I don’t like talking about my disease, because no one likes to hear about it, no one who doesn’t have an autoimmune disease understands it and it’s excruciating to sit through the various reactions – i.e. pity, commiseration and judgment. Who can really relate with a disease that looks so normal on the surface, while internally it’s like being pecked by a hundred birds? It’s beyond a healthy person’s comprehension. Truly, the one person who ever seemed to understand said it was weird.

My ulterior motive in writing about this is of course to raise some awareness about the autoimmune disease epidemic. I encourage you to visit the Sjögren’s Syndrome Foundation website at www.sjogrens.org and learn more about the disease. Or learn about another autoimmune diseases like lupus, Hashimoto's thyroiditis, multiple sclerosis, autism, rheumatoid arthritis, Crohn's, etc. In the universe of autoimmune diseases Sjögren’s manifests as the body attacks its own moisture producing glands. Since there isn’t a system in the human body that doesn’t rely on some kind of secreting gland, it’s a systemic disease that can affect many body functions. The most basic symptoms are dry eyes, dry mouth, joint pain and fatigue. The symptoms get worse and less predictable from there.

It’s been six years since my diagnosis and I never know what symptoms I’ll have from one day to the next. Indeed, after weeks of increasing fatigue, a serious crash and dragging myself through a day toward the next crash, I woke up this morning feeling bright eyed and bushy tailed. Weird.