A Pained Life: I Was a Platypus

By Carol Levy, PNN Columnist

Have you ever seen a platypus? The semiaquatic mammal from Australia that lays eggs and is duck-billed, beaver-tailed and otter-footed?

It’s hard to believe it is actually one animal. In fact, the first European scientists to examine the body of a dead platypus thought it was fake, made from the parts of several different animals that were sewn together.

To many doctors, people in pain are platypuses.

When my first symptoms of trigeminal neuralgia started many decades ago, a patient had to have three specific diagnostic signs.

The pain had to be spontaneous and triggered. Mine was. It had to be in a very specific anatomical area of the face. Mine was. You also had to be over 60 years of age. Or, if you were in your 40's or 50’s, you had to have multiple sclerosis.

I wasn't in my 60's and didn’t have multiple sclerosis. Therefore, because of my youth – I was 26 at the time -- it could not possibly be trigeminal neuralgia. “It looks all the world like trigeminal neuralgia. But it can't be, because you're too young,” one doctor told me.

Two of my symptoms were by the book, but the last one, my age, was like the otter's feet. I was a platypus.

Things have changed a lot over the years, The criteria for a trigeminal neuralgia diagnosis have changed significantly. The pain can have a number of different characteristics and the association with old age was completely wrong. Even toddlers and newborns can have it. Age doesn't matter.

Complex Regional Pain Syndrome and other chronic pain disorders have us presenting many different symptoms to our doctors that, on the face of it, don't make sense. Many of us complain, rightfully so, that the doctor didn't listen when we described our symptoms. Some may fit a specific disease or disorder, while others do not.  

The doctor seemed to listen, but heard only one or two of the symptoms while ignoring others -- the ones that didn't fit their preconceived notion of what we might have. Or didn't fit the textbook description. As a result, we often don’t get the correct diagnoses, and without the right one there is no way to treat the condition or pain correctly. 

When pain became a specialty of its own, when doctors started opening practices solely for those of us living with chronic pain, it seemed like a godsend. We would finally be seen for the singular entity we were -- persons living with pain --- not some platypus that doctors saw as too bizarre to be real. We would be legitimized. 

Unfortunately, since they started taking the “war on opioids” out on the chronic pain community, making us the villains, it seems our legitimacy was lost. 

We are not like patients with other diseases like cancer or diabetes, where the diagnosis is straightforward. We still have to fight to be believed, and to be heard.

It took time for platypuses to be seen as real, more than just an oddity of nature. Let’s hope that someday we will also be believed and accepted. 

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.”  Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.