Chronic Illness and Being a Zebra

The newest diagnosis my doctor is pursing is a genetic disorder called Ehlers-Danlos Syndrome. I'd never heard of it. Upon looking it up online and joining an EDS group on Facebook, I noticed their mascot was a zebra, but I didn't know why until yesterday during a conversation with my doctor.

"In medical school they tell us when we hear hoof beats, to assume first it's a horse, because it's almost always a horse. But every so often, it turns out to be a zebra."

That is to say, the majority of the time, people are relatively easy to diagnose. But then there are people like me - The zebras. And let me tell you, it doesn't feel glamorous, nor is it a club I wish for anyone to be part of. But I am part of it. So, I'm leaning in.

I’ve been in the hospital for 5 days now with a severe headache on the left side of my head. I spent about 9 days trying to treat it at home, having my doctor call in various prescriptions, to no avail. So finally I went to the emergency room on Saturday, and here I am, 5 days later, feeling a little like I’ve moved in.

This is what having an undiagnosed chronic illness is like. You’re never sure what your body is going to decide to do or what new symptom is going to pummel you over without warning.

I’d been having a healthy-feeling several weeks. I deal with endometriosis, but I know what to expect with that, so there weren’t any surprises. I’ve been going through loads of testing with a GI doctor to sort out whether all my digestive issues are endo related or whether there’s something else going on. That’s all average, a-day-in-the-life type stuff for me. Then one day, I started getting a headache.

It didn’t feel particularly frightening. It came on while I was out running errands one day and I thought maybe I hadn’t drank enough water. It came and went all day that day. For the next week or so, the same thing. I’d be fine for most of the day, then another headache would come on, until one day, a little over 2 weeks ago, it settled in and hasn’t left since.

So far, 4 CT scans, an MRI and an x-ray all came back normal. My bloodwork and vitals look good. I think they’ve tried upwards of 6 migraine medications as well as steroids and nothing has touched it. It just won’t quit. I’ve been living with an ice pack attached to my head and neck most of the time and spend about ¼ of the day battling nausea. I have very little appetite and have learned to enjoy the taste of vanilla Ensure.

I’ve never been in the hospital this long. I feel like this is part prison sentence and part vacation because my accommodations are nice but I’m not allowed to leave my unit and haven’t breathed unfiltered air for 5 days. Don’t get me wrong, being able to press a button and get new ice packs and water refills is lovely. My nurses are fantastic humans and I adore them, but also, I low-key feel like I’m never getting out of this joint.

My daily entertainment consists of putting on my slippers, making sure my butt isn’t hanging out of my hospital gown and walking laps around my unit. On the upside, the pediatric unit is connected to mine, so I do get to see cute babies on many of my walks. Otherwise, round and round I go until I feel light-headed and need to head back to my room for an ice pack and some rest. It’s crazy to get worn out after 10-15 minutes of leisurely walking. We’re talking about me, who can spend an entire hour walking briskly on the treadmill just for the fun of it, or spend an entire day hiking through the woods merrily.

This is chronic illness.

So, as I lay here in this hospital bed that has lovingly if not begrudgingly began taking on the shape of my body, I’m still searching for answers. I spent about an hour yesterday making a list of possible causes I crowd sourced from several of my health-related Facebook groups to show my doctor. I also worked more on a detailed list of ongoing symptoms, most of which he already knows about, but it never hurts to stay on top of.

My advice for today in terms of being your own advocate - Keep a detailed list in your phone of ALL your symptoms, even things that seem insignificant. This makes it so much easier when you go in to talk to doctors about what’s going on and helps you document any new symptoms that might show up. Because as we zebras know, new symptoms are just around the corner at any given moment.

Hang in there fellow chronic illness warriors, we’re so much stronger than the limitations of our bodies.