Yeah? Well I Get Tired Too.

They can’t “see” your illness, so they don’t believe it.

My Apple Watch woke me from my deep sleep as it vibrated gently. I woke up in a daze and looked at my wrist. 5am. I put my head back down and slapped blindly at my wrist until my watch stopped its short series of buzzes.

I closed my eyes again and thought about whether or not I was actually going to get out of bed; I was so exhausted. I yawned, stretched, and reached for the light switch over my bed.

“It’s Friday. Just one more day.” I thought to myself.

I was super tired at this point and was kinda feeling unwell enough to call in sick, but I checked my work email before going to bed, and saw that there was a potential situation that “might” need my attention, so i figured that it would be best if I just went into the office. There was an important package that was missing, and the contents of it were needed by 8:30am that morning. If it couldn’t be found, I would need to reproduce all of the documents in that package.

There was a very real possibility that everything would be just fine and the package would turn up. The Purolator tracking number showed that the package had arrived…but as of last night, it hadn’t been delivered to the right person. This isn’t out of the ordinary, especially in large office buildings where the mail is delivered to the mailroom.

But, Murphy and his damned law kept me from staying in that bed. I got myself together, stepped into my black and white huaraches, and headed out the door.

It was raining. Lucky for me I remembered my umbrella. I attempted to open it; it was stuck. I looked down the street and saw the familiar blue lights of my bus. It was stopped at a red light which was one bus stop before mine. There was no time to go back inside and find another umbrella. So I raised my shoulders in a permanent shrug to keep the rain from trickling down my neck and raced down my street and across another street to catch my bus.

A bus and two trains later, I was walking through my building. I fumbled my phone out of my jacket pocket and opened up the Starbucks app. Grande latte, 5 pumps vanilla. I usually get a cafe misto because it’s a bit cheaper, but I needed all of the juice I could get.

Armed with my Starbucks, I stepped into the elevator and closed my eyes as I headed up to my office’s floor. It was Friday, it was early, and it was quiet.

I sat down, plugged my laptop in, and turned it on.

As I waited for my laptop to boot up, I took my phone out and checked my work email. Good news-the package was located.

I sat semi-slumped in my chair while I waited for my computer to boot up. A manager on the floor came over to my desk.

“Hey hows it going?” she said.

“Fine thanks, a little tired. How about you?” I replied.

“Why, what did you get up to last night?” she replied, ignoring my question and instead questioned me to determine the validity of my tiredness.

“Not much actually, but the last few days have been busy.”

“Ha! I wish I had YOUR problems! Try having 3 kids, a husband, and a household to take care of!  Not to mention a dog!” she replied.

“Strange.” Is what I thought, but didn’t say out loud. I thought this because she knows that I have a medical condition. She knows that I get tired. At the same time, I’ve always suspected that she didn’t fully “believe” me.

“Poor you.” I finally replied.

“You know,” she said, “I saw you eating a croissant for breakfast earlier this week. Maybe if you are better and took better care of yourself you wouldn’t be so unnecessarily be so tired all the time.”

I stared at her, silent and expressionless.

“…it’s just a thought.” she said.

“Thank you for your unsolicited feedback. I said, still expressionless.

“As I’ve mentioned to you before, I have lupus. That contributes to my fatigue.”

“Well, I mean, I know, but you don’t look like you have anything. My next door neighbour has cancer and she has to sleep a lot because of the medication and stuff. That I can understand.”

“Are we through here?” I said, more annoyed then ever.

“Ok, have a nice day! she said in an oblivious manner as she sauntered away.

I face situations like this every so often. I work extra hard to keep on top of things and take care of myself at the same time. I feel like I have to work twice as hard just to be on par with everyone else.

There have been several occasions where I’ve told people that I have lupus, and they still have that shitty attitude towards me. I know I don’t walk around dragging my feet and looking tired and pissed. I’ve actually been blessed in that I haven’t had any major lupus flares in years. But the fact remains that fatigue will always be one of those “things” I struggle with.

My hemoglobin is in the 80s (or 8.0 for my American friends). “Normal” is about 120 (or 12.0). 80 is actually quite good (for me) since I’ve been as low as 50-something…and still working as usual until my blood results came back and my doctor left a concerned message on my voicemail telling me to check myself into the hospital immediately.

I don’t expect everyone to understand my condition. What I do expect is that people would hold onto their judgements and make an attempt to learn more before coming to conclusions about me, who I am, and what I deal with.

Simple…right?