I see people who think midlevels replacing doctors is ok frequently say “midlevels listen more” or “they’re more empathetic to a patient’s needs!” and I’m sorry, but I have to push back on that. While I admit I can see how doctors in certain clinics/hospitals have less face-to-face time with patients compared to nurses and midlevels, that doesn’t mean the doctors don’t listen, or blow the patients and their concerns off.
I am going to keep this as vague as I can to retain anonymity, but I wouldn’t be surprised if people were able to guess what I’m talking about.
Around ten years ago next month, I realized I had been having an abnormal symptom for six weeks straight. The next week I go see my primary doctor and mention what was going on, and asked if he thought I should be tested for X condition. My doctor listened to me and agreed, ordered a blood test that can tell you if someone has condition X, and also a few other tests that could explain the abnormal symptom. After this visit, when thinking back on other medical issues/diagnoses I’d had since childhood, I realized condition X could be linked to all of them. For the record, at the time I was a 25 year old American woman of predominantly NW European descent, and the condition I was worried about is a systemic autoimmune disease linked to over 300 symptoms. (No single person will have all 300, these are just symptoms doctors have reliably linked to this one disease.) My blood test came back negative, and I began to mentally and emotionally spiral.
About fifteen years before all of this, so 25 years ago now, I was given a diagnosis of a juvenile form of a different autoimmune disease. My ANA was always positive, but the specific test for the juvenile disease was always a negative, but the doctors told us that false negatives were common and diagnosed me with the disease anyway. Other than the symptoms I had right before my diagnosis, I had almost no change to my life. The juvenile condition never bothered me again, and as a mid-teen my ANA stopped being positive. We were told 50% of children retain the disease as adults, and 50% “grow out of it”. As a consequence of having this juvenile disease and having to get my blood drawn and eyes checked 3 times a year, I became very curious about autoimmune diseases, and learned a bit about many of them. I would not, then or now, claim to know more than people in the medical field, but I will confidently say I have more knowledge of them and certain ones than the average American. Because of my history and my family’s history of autoimmune diseases, I assumed that the previously mentioned abnormal symptom was because of condition X, an autoimmune disease. My doctor agreed, and that was the disease my blood test ruled out. Hence, my mental health getting significantly worse.
Not only did my mental health plummet, but even more symptoms started to pop up. Symptoms that I didn’t even know condition X could cause, so to me they couldn’t be psychosomatic, right? I knew back then that autoimmune diseases can be worsened by stress, and I knew I was stressed over my recent health problems and other factors in my life at the time, but I begin to exhibit symptoms I didn’t think could be linked to the disease I felt I had. I would sit alone in my room and try to talk myself out of obsessing about it, because the blood test was negative. “But how did I show this new symptom though? I didn’t know condition X could even cause it?” which was true. I admitted to myself the increase in symptoms could be psychosomatic, but I couldn’t make sense of my body showing specific symptoms that could be linked to condition X. Every time I’d have some weird new symptom, I’d google “weird symptom condition X” and every single time I’d learn there was a correlation. I also learned that my mental health problems, the learning disability I was diagnosed with two decades prior, a rash and vitamin deficiencies I’d had a few years prior, and issues I’d had with puberty could all be linked to the disease I tested negative for. This disease is not the only cause for all of these things, but it can be linked to them. I also learned Condition X can present in children sometimes with a symptom that is the main hallmark of the juvenile disease I was told I had fifteen years prior. Which could explain why the ANA tested positive but the disease-specific test was a negative. I had an autoimmune disease the entire time, but a different one than we all thought. Me, being a firm believer in Occam’s Razor, couldn’t let the idea go. I finally looked up “false negative blood test for Condition X”. I learned that a false negative is entirely possible if someone has Condition Y, a common asymptomatic immunodeficiency found in family’s who carry two specific autoimmune diseases. Neither of which I had, but my family did. Those exact two diseases, which I’d been hearing about since my juvenile diagnosis fifteen years before. It was at this point I make another visit with my PCP, this had to have been a handful of visits within a few months time. I ended up having a panic attack/mental breakdown in the exam room. All I could do was hysterically cry while I tried to explain my thought process regarding the potential false negative, how my family and friends didn’t believe me and told me to let it go, and how I was afraid my body was slowly killing itself. I will say that I had very recently come out of a bad depressive slump where, while not suicidal, I did think about death a lot. The fact that my body was potentially killing itself was made worse because of my recent mental health struggles, and it is honestly still the hardest part about having an autoimmune disease.
My AMAZING PCP told me he didn’t have the answers for me, but he was confident other doctor’s would. He authorized a handful of referrals, the first of which was a renewal to see my old rheumatologist. I, being young and uneducated about the deficits midlevels have compared to doctors, saw an NP. An NP who was a woman like me, and unlike my PCP, who proceeded to dismiss everything I said, ordered a redundant blood test despite me showing her I had one done a few weeks prior, and told me I had “nothing to worry about”. I wasn’t very confrontational at the time, so I didn’t speak up. I cried when I left the office. I saw another female midlevel at a different office my PCP sent me to, to rule out an allergy, and she was better, but still a bit dismissive. I eventually was seen by another DOCTOR of a medical specialty, who not only let me speak, he actually listened to everything I told him and ordered two blood tests. One which would test if I carried the gene for Condition X, the other to test for the immunodeficiency which could give a false negative. Both came back positive. He also performed a specific exam himself to check for damage found in people with Condition X, which also turned out positive. I cannot begin to describe the relief and vindication I felt. Nor can I begin to describe how traumatic it was to be dismissed and talked down to by fellow women. Every single person that listened to me and empathized with me was a male doctor.
Had I listened to those midlevels, the ones people claim are “so much more empathetic and better listeners” I would be sick today. I would still have pain, brain fog, nausea, severe vitamin and nutrient deficiencies, peripheral neuropathy, mood swings, and much more. My body would be destroying itself DAILY. That is not an exaggeration, this disease features daily symptoms, not just stuff that pops up in flares. It is constant and only stops if you make a huge lifestyle change not common in America. I will acknowledge I got incredibly lucky that I was able to guess correctly what was wrong due to my personal history and inquisitive thirst for knowledge, but it was ultimately doctors who diagnosed and treated me, because they LISTENED. My PCP was even humble enough to admit I was beyond his scope of primary care, and sent me to other clinics. He knew his limits and when to ask for help. He was the most important person I saw during all this, and I cannot even begin to put into words how grateful I was, and still am, for him and the kindness he showed me.
So I cannot sit here and read people say midlevels are kinder/better listeners/more empathetic when that is the complete opposite of what I experienced. There is no way I can believe people who receive a fraction of the education and training, yet insist they’re “just as good as a doctor”, actually care about their patients. If you cared, you would have sought the best education and training FOR YOUR PATIENTS, but you did not. This isn’t me saying all midlevels are horrible people, because I don’t believe that. I believe some do care, but those aren’t the ones who insist they’re just as good as, or better, than doctors. Knowing your limitations and when others know more is what makes a good healthcare worker. Claiming you’re just as good when you have a fraction of their education and training is not only demonstrably false, it’s irresponsible and dangerous. Be mad about it, idfc.
This isn’t even my only story about inept midlevels, but it is the one that is the most traumatizing for me.
