When You Don't "Look" Sick Enough

My ankylosing spondylitis (AS) is a strange creature — it's very unpredictable and there are times when it doesn't seem to exist and times when it's all I can think about. Sometimes I feel like it defines me, other times it feels like a ghost that flits and out of the room of my life, half-recognizable, half a memory of a memory. Day to day is different.

Good days feel like they'll last forever

On a really good day, even I struggle to remember my own pain. I workout, I work, I have tons of energy, and I think the painlessness will last forever. It never does.

But bad days come back

If you see me on a "good" day I probably won't mention my AS. I might squirm a lot, change seats, sit down more often, and stretch — but that is the most you'll notice. On a bad day, I look like a ghost of myself, unable to keep up a conversation, teary-eyed, tired. I breathe heavily from costochondritis. I cancel workout classes. I live with a heat pack, a hot water bottle, and I smell of Icy Hot.

Sometimes I sleep all the time

Walking means stopping every three minutes, bending down to stretch out my back, rocking back and forth to help my hips come "unstuck" and feeling pale and feverish and weak. Sometimes I'll get gut issues, uveitis, or skin rashes. Sometimes I sleep all the time for no obvious reason. And then there's the brain fog. You'll ask me a question, I'll scramble to answer — my reaction time delays.

Or, I'll ask you a question and you'll say, "You just asked me that!" Cue me saying, "I'm so sorry, I'm brain dead." It's embarrassing but anyone who knows me well knows that this is the case. Thankfully, they can be very forgiving. (Side note: Living with a chronic illness that causes me this sort of fatigue and brain fog also helps me be more patient and compassionate with others, which is great. )

I used to want to control the ups and downs, but the reality is, even when I mitigate my triggers, I absolutely still experience them.