Doctors Need to Be More Open to Looking for Zebras When They Hear Hooves

Oh joy! Another odd, strange, bizarre symptom to add to the collection has reared its ugly head. You know what I needed was another “thing” for my battalion of doctors to test for. Something that “doesn’t make sense,” “doesn’t follow conventional rules” – we who live with autoimmune diseases like lupus are so used to this it’s like an old friend. We live in the world of the unknown.

There is an old adage in medical school that tells doctors when they hear hooves to look for horses – not zebras; in other words, look for the most common, not the exotic. Unfortunately,we lupies tend to live in the Sahara with the zebras and doctors who aren’t willing to look past the hoofprints of the horses are frustrating and exhausting for us. In my early years, I lived in the uncertain world of pre-diagnosis, a miserable 15 years of test after test, a parade of doctors, some more willing to embrace the exotic and others unwilling or unable to remove the blinders that only horses existed. I can’t even get into the damage those doctors did to my self-esteem and my health (that’s a whole other post!). Just know I am forever grateful for the amazing, brilliant, compassionate team I have assembled now.

Even with my amazing team of doctors, the thought of dealing with another “party favor” from either the lupus or fibromyalgia or Hashimoto’s thyroiditis or diabetes or any of the host of medications ingested to treat the symptoms of all of these (and the medications taken for the complications caused by these medications!) is daunting. I’ve already done the “do I really need to report this?” debate as all of us with chronic illness learn to do. I swear, most of us could have a limb falling off and we’d do a pro/con list about going to the ER. Then you do the “which doctor do I report this to?” question, which is never easy. Sometimes it’s easy and clearly easy to trace back to a new medicine or organ system (involves breathing? call the pulmonologist!). Other times it involves multiple systems or defies logic and there’s no clear cut answer.

Sometimes your doctors will give you a “flowchart” of whom to call. Other times they play “pass the patient” and bounce you back and forth. This time I spent time on the phone with nurses, receptionists and various doctors’ personnel (have I mentioned yet how important it is to be on a first name basis with these people?) from two different doctors’ offices only to be sent to my primary care doctor who immediately said I should have been at the specialist’s office. She’s an amazing, brilliant clinician who always has my back and gets as frustrated as I do when this happens. And this happens – a lot. Until you find the right specialists who aren’t afraid to ask the tough questions, look a little deeper than the surface and spend more than the 15 minutes the computer has squeezed you in for, you end up feeling like a tennis ball, passed back and forth from doctor to doctor. (Incidentally, my favorite quote from my primary care doctor is: “Amanda, I dream of the day you come in with strep throat or a sinus infection – just something easy I can fix for you!” I love this lady! No matter how hard and murky things get, she keeps fighting for me.)

I once had a neurologist who was great with my migraines but once things progressed into the more murky world of autoimmune territory he wasn’t the right fit anymore as he wasn’t willing/able to look past the simple answer, even when it didn’t fit. When I called with horrible pins and needles and shooting pains in my feet and up my legs he insisted I didn’t need to see him – I needed a dermatologist, as this was clearly a rash. Um… Looking down, I clearly saw no rash; however, a visit to my rheumatologist confirmed it looked like we were now dealing with neuropathy, a neurological complication from lupus and other autoimmune diseases. Once I finally convinced this neurologist to see me and he saw no rash (um, hello, vision is not one of my issues here?), he reluctantly agreed this was neuropathy (tell me something I didn’t know already). Needless to say, this was my last appointment with him.

As I go into the unknown tomorrow, here are a few things I’ve learned (some the really hard way!) over 30 years of dealing with the weird, strange and odd world of symptoms that don’t make sense.

1. Go in with no expectations. I used to go in expecting the doctor to have all of the answers, only to be anywhere from upset to devastated to find out further testing/another doctor/”wait and see” was going to be the answer. When you go in with no expectations, you can’t be upset as you don’t get your hopes up – you just go in and listen.

2. Do not Google your symptoms, no matter how tempted you may be. No matter how benign it may be, you may end up being convinced you have weeks to live. Before you start making your will and planning on finally telling off your boss, remember that if you ever want any reliable information about your disease, look for ending extensions like .edu, .org or .gov (best advice from my beloved rheumy). Anyone can write and publish under .com (just look – they are publishing my words!) Personally, I like the Mayo Clinic, the National Institute of Health and, for lupus, the Lupus Foundation of America.

3. Write down everything you need to report, including a timeline of this newest problem. In the heat of the moment, you are apt to forget something and don’t want to waste valuable time fumbling with your phone calendar to figure out exactly when things started. This is especially important for those of us impacted by lupus/fibromyalgia fog, when there are times we are lucky if we can remember our name, let alone specifically what day or in what order things happened.

4. Keep calm and know this too shall pass and more will come. Yes, life in the land of lupus is never dull. You can’t get all excited and panic every time something odd or weird pops up. Seriously, you won’t make it through the first few years of strangeness if you ring the alarm bell every time your body does something bizarre. I’ve developed a kind of odd, detached, fascinating, narrating-a-wilderness-documentary-special approach to my own body. (“Look, the lupie is showing her bold red markings across the cheeks and nose. The blazing hot to the touch rash is common amongst her kind and marks her as a member of her tribe. Was it the brief walk from her place of employment to her car and the exposure to the bright day sun that caused this today? Perhaps the lupie should not have stopped to exchange pleasantries with her coworker, a non-lupie, who did not have the same UV concerns. Stay tuned to see if this will produce a full-blown flare or blow over by the morning.”)

As for me, I go into tomorrow’s appointments knowing it’s just the latest chapter in this saga that is “Life With Lupus.” There are no easy answers when it comes to dealing with chronic illness, especially autoimmune illnesses like lupus. But it won’t stop me and my team of intrepid doctors from continuing to look. And I’m forever grateful for those doctors who know that while not all hoofbeats are horses, we lupies are sometimes zebras, ostriches, meerkats and half the cast of “The Lion King.”

Thinkstock photo via LAByrne.