Debate For Your Life

Look for zebras not horses

By Vern Nowakowski with art by brooke lambrecht

There are many things to be angry about in the American healthcare system. As someone who has grown up frequently dealing with that system, being a patient is a never ending exhausting journey, even without the illness or injury. The exhaustion comes from the self advocacy that is required in this country. Patient gaslighting is what plagues the American healthcare system.

I have Ehlers Danlos syndrome. This disease manifests as frequent dislocation of joints and skin problems. The first exhausting part of the journey is getting diagnosed with the disorder. It requires a specialist that is booked out months ahead. I remember, when I was a child, trying to desperately convince my pediatrician that something was wrong with my legs. All I got in return was a reassurance that it was only growing pains. Last time I checked, dislocating your knee two times a month is not “just growing pains.” 

Patients shouldn’t have to debate their doctors for a consideration of the diagnosis. While I understand that WebMD doctors are a problem in the medical field currently, it still shouldn’t be this challenging to get a proper diagnosis. I have debated more in the hospital than I ever did when I was on the Speech and Debate team. 

Eventually I started to keep a notebook about all of my symptoms and problems that I was having. I decided to organize my notes as if it was evidence for a court case. 

The support came from my doctors too late. One day my knee dislocated and took all of my ligaments with it. When the orthopedic surgeon at Children’s hospital looked at my leg, he was shocked that I had not received treatment up until then. The amount of bone chips I had in my knees were the equivalent of a 58-year-old marathon runner. I needed to get major reconstructive surgery on my left knee, and I have been in treatment for the right knee ever since.

So many complications could have been avoided if my doctors had just considered my requests. The gaslighting I received about a disorder I actually had was ridiculous. The specialist on EDS that I currently see is baffled that anyone could miss this diagnosis, especially with my notes. 

An EDS diagnosis requires a simple examination called the Beighton Test to see if the patient has a basic hypermobile type. It takes less than 5 minutes to complete, and no equipment is needed. Less severe EDS patients will have a score of 6 out of 9. I had a score of 9. Which made me wonder how many patients with less severe symptoms are suffering because of a neglectful primary care physician and no access to a specialist. 

I am angry for those patients that don’t have the resources nor confidence that I had. I am angry because I’m familiar with that confusion and self doubt. I know the amount of effort it takes to argue with doctors and then, on top of that, insurance. It is exhausting to be ill or injured, excluding the illness and the injury. 

Wake Mag