“We don’t know” comes in many forms. For example, the car mechanic quizzed about a part failure often states they don’t know why it failed. The heater-air conditioner technician told me two weeks ago that he did not know why the blower motor was leaking oil. “It’s old.” Children who spray-painted the car are asked why often retort with “I don’t know.” Then there are medical doctors.

“Doctor, I was cutting vegetables. My right wrist, elbow, and shoulder hurt painfully with each cut. So much so that I had to stop.” The doctor looked at his computer, “That’s a great question.” The comment ‘that’s a great question’ is like, “We don’t know.” Of course, the pain could be tendinitis, Carpal Tunnel Syndrome, or “You sleepwalk and play drums all night.” A lot of times, doctors don’t know.

Thus, when you end up at the doctor’s office because you cannot cut a zucchini, but the doctors look at you like you’re an idiot, it’s tough not to feel like you’re losing your mind. You’re often not taken seriously. For a patient whose symptoms don’t fit into the doctor’s repertoire of snappy diagnosis, you’re dismissed. “Take two acetaminophen and call me in a week (which is six weeks, for six weeks is the next available time slot they have). I hoped the clinician would say, “You were very right to come in. Fortunately, we have this magic pill, a pseudo-acetaminophen with no side effects, and will return you to normal in two days.” However, such scenarios are seen only on forty-minute television shows like Marcus Welby or The Good Doctor.

With much of my life in the rearview mirror, I’ve heard the words ’we don’t know’ hundreds of times. Senior fellow at the research institute RTI International and founder of the Society to Improve Diagnosis in Medicine, Mark Graber, once stated, “Diagnosis is tough. There are 10,000 diseases and only 200 to 300 symptoms.” In 2015, the National Academy of Medicine reported that most people would receive an incorrect or late diagnosis at least once, sometimes with severe consequences. It cited one estimate that 12 million people — about 5 percent of adults who seek outpatient care — are misdiagnosed annually. 

Here’s the tricky part. When a healthcare provider dismisses your illness, telling you it’s “all in your head,” you’ll want to change healthcare providers and find one who will work with you respectfully. My case manager asked whether I should change doctors and see a more supportive neurologist and personal physician. “Or,” I replied. “I can wait until the symptoms get bad enough for diagnosis. Yes, it’s true; healthcare providers want you to have a precise diagnosis to facilitate proper treatment. However, I was in the ‘we don’t know’ group of patients.

I thought about driving to the Vanderbilt Center for Undiagnosed Diseases. The center brings together clinical and research experts who work with experts worldwide to solve patients’ most challenging medical mysteries. At one point, I thought about creating a computer Zip file of all my medical stuff and emailing the Vanderbilt clinic for assistance. I would give them a week or two and follow up. I decided against it. Of course, I could drive to the Mayo Clinic in Minnesota, Indiana University, or fly to Stanford. However, my fear is the “We don’t know” response.

What gnaws at me is all the time wasted time patients spend searching for clues. Endless repetitive medical Treatments steal life. Of course, when living with a terminal illness, one does not want to spend endless days in a physician’s waiting room. But, on the other hand, there are no beach trips and days of UV sunlight burning a hole through whatever you’re wearing. All the bloodwork and CT scans can produce little in the way of satisfaction. And in the era of COVID and working remotely, I’ve been told to remote in more often. However, when your arm feels pain cutting a zucchini, life sucks.

A friend once stated that I was stronger than I knew and that my illness does not define me. Personally, that’s bullshit. In reality, a life-threatening disease makes one confront the realities of everyday life. As a result, we step back and question ourselves and the implications of the illness. It’s hard work, but it has to be done. I still want to do as much for myself as I can. I am independent, stubborn, and as of right now, not physically hindered. 

People may look upon me with pity as though I will get my angel wings at any moment. They observe me, looking for signs that I’m suddenly healthy. Yet, outside of 37 pounds lighter, I more or less look the same as I did a year ago. I don’t fit the bald stereotype seen in television or movies. I am just trying to do my thing, and hopefully, one day, we can get past the ‘we don’t know’ statement.