Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

They Aren’t Looking For Us, But We ARE the Zebras


“When you hear hoof beats think of horses not zebras.”

- Dr. Theodore Woodward

I remember my Dad telling me “when you hear hoof beats think horses not zebras” a few times when I was growing up and came to him worried about a medical problem I thought I had. In reality I was borderline panicking inside but trying not to show it. My Dad explained they taught the students that mentality back when he was in medical school because the most likely answer is usually best first option to investigate. My Dad had a solo orthopedic surgery and sports medicine practice for 27 years so it wasn’t odd to me walking in to find him watching videos of a surgery, hanging out at the nurses’ station or doctors’ lounge with my sister when he got called in for an emergency or to see a patient. His brother, my uncle, was also an orthopedic surgeon, and their Dad, my Grandpa, was a thoracic surgeon. My Mom, her two sisters, and her Mom were also all nurses. So medicine, injury, illness, hospitals, doctor’s offices were just part of my childhood; I know that influenced me a lot, especially dealing with my own medical….well anything I’ve ever had medically really.

I’ve always been a worrier, but growing up around medicine like that had a unique effect on me. I don’t think I still fully understand it. On the one hand, like I mentioned in my other post, every time my sister and I would cough it seemed like we were off to Children’s Hospital downtown. That might be a slight exaggeration, but my parents are both worriers too so I know that rubbed off on me a lot. My Dad has told me the story a few times about how in medical school it seemed like he would suddenly start worrying that he had every rare, serious disease or condition they studied and he’d start looking for symptoms thinking he was finding something absolutely alarming. But, on the other hand, sometimes I also realize when there was a more serious concern having a doctor Dad who had to listen to people complain and exaggerate all day might not have been the most helpful for what I actually had. When I was eight and somehow ended up with a teeny tiny chunk of metal in my eye (who knows how I managed that really) I kept going to my parents telling them it felt like there was something in my eye. I felt like a huge rock to me. They tried flushing it out with sterile saline solution and they looked and looked but told me they just couldn’t see anything. After about two days they finally took me in to have it looked at and turns out….there was piece of metal in my eye so small they couldn’t see it. A zebra. The ophthalmologist numbed my eye and carefully removed it. I had to wear a patch and put goo in my eye for about a week. The ophthalmologist said I was lucky I came in when I did, that it didn’t scratch my cornea, and it shouldn’t cause any permanent damage.

Then there was a time much later in graduate school when I noticed a big lump on the back of my thigh. I couldn’t figure out what it was and, of course, my anxiety and panic kicked in immediately. I went to the worst possible scenario I could imagine- not horses. I thought it must be cancer. I had my Dad take a look at it and he thought it could be a herniated muscle. He was almost panicky and ready to rush me over to the ER to have an MRI. Then my Mom, my biggest comfort, talked me through what I had been doing recently and we realized it was just a lump and the start of a bruise from me carrying the books and students’ exams from my TA class in my huge bag. I didn’t realize how heavy it was and that it was also repeatedly whacking into the back of my thigh as I walked all over campus. A day later a big bruise appeared and about three weeks later the bruise and the lump had healed. Horses not zebras. So sometimes that saying has helped me, calmed my anxiety down, and pushed me to look for something more likely as opposed to where my mind always goes….the most scary awful option.

med school 101

However, I’ve found with my Raynaud’s, sleep disorder (DSPS/DSPS), stomach problems, and even my mental health issues and PTSD that I’m a zebra and it can be extremely hard and frustrating sometimes both in how we zebras deal with it ourselves and with how we interact with the world. We aren’t horses- something familiar, something doctors see all the time and can diagnose easily. We don’t have illnesses, disorders, syndrome, conditions that will get better or be cured or are even that well manageable. The first time I ever talked to my Dad about Raynaud’s wasn’t until I was 32, a few days before the appointment with my doctor when got my official Raynaud’s diagnosis. Deep down I knew I had it. I made the appointment to get the diagnosis for it. Ever since I started researching Raynaud’s after my friend (who has Raynaud’s Secondary to Scleroderma) asked me if I had it that winter I knew I had it. That day I told my Dad “I think I have Raynaud’s”. I remember my Dad being slightly distracted and paused to look at me for a moment replying: “no no you don’t have Raynaud’s. That’s only something older women with other health problems usually develop.” Then my Dad went back to what he was doing and we started talking about something else. I understand my Dad’s reaction was the result of a combination of factors- I hid and downplayed my Raynaud’s stripes and symptoms really well. Plus I know my Dad was thinking horses and didn’t want to consider me having Raynaud’s either.

Even though we zebras aren’t horses we also aren’t on the endangered species list. Our chronic conditions aren’t putting us in immediate life threatening danger and aren’t contagious or going to kill us or anyone else immediately. I’m EXTREMELY grateful for that part, please don’t get me wrong! There’s an episode of the TV show House that features this horses/zebra analogy that I’ve watched too and throughout the whole series Dr. House isn’t looking for the most likely answer, but putting together a more complicated puzzle of symptoms and situations when his instinct immediately knows-not horses. But Dr. House isn’t really looking for zebras either; he’s actually looking for extremely rare and critically endangered. Zebras’ conditions don’t really stand out as a major immediate life threatening medical concern to society as a whole.

Therefore, there isn’t the attention, money for research, or understanding and care, concern, and knowledge from society for us because the zebras aren’t considered critically or seriously endangered. We can live with our conditions and try to manage them to certain degrees, but still, our quality of life isn’t the same as the horses either. Yet society and even we ourselves often hold us to the same standards despite the challenges we face. Sometimes you can see we’re different somehow and our stripes show, like me in the mall in the summer in my winter coat. And sometimes you can’t see it, like no one would know I have a sleep disorder by just looking at me. Sometimes it’s the little things and sometimes it’s the big things that remind us we have these stripes too and life can be harder for us. We’re also all unique, just like horses, endangered polar bears, and every person and living creature is unique. We all need other people, a herd, a pack though. If we can try to understand each other, and us zebras not be afraid to show our stripes and find our voices, and we can try to help each other and be kind to each other we could all make the world better for everyone.

Until next Friday,

Amy L.
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