#Patientsarenotfaking

You know when I mentioned that whole “once a week” blog post ambition? That was fun, wasn’t it?! Maybe I will aim for once a month and see how that goes! I have had this topic on my mind for a while, and when I saw a recent, controversial video making the rounds online, I thought now would be a great time to write down some of my (lengthy, sorry folks!) thoughts.

In this video (a tik tok post. what is tik tok? is it the new vine? I don’t tutor anymore, so I can’t ask my cool students about the newest stuff…) a nurse plays the roles of both herself as a nurse and her patient. As the patient, this “nurse” apparently pretends to have an episode where she is hunched over in pain and can’t seem to catch her breath. While gasping for air dramatically, the “nurse” version of herself starts beat boxing to the sound of her patient’s labored breathing and dances out of the room swinging her stethoscope around. The caption on the video reads “we know when y’all are faking”. First. You are a great dancer, and your beat was pretty cool. Second. Yikes, this was pretty tone deaf. I have seen reactions on both sides. There are those who reacted with “yas queen, you get those fakers!” and those who saw this short video as a commentary on a lot that is wrong with the medical community and started the twitter hashtag “patientsarenotfaking”. I tend to fall into the latter category. Look I don’t know this woman. I don’t know what kind of a nurse she is. I don’t know anything about her except for this video she posted. And in the world of the internet, things can turn nasty quickly. So this is not a condemnation of this nurse. I am merely using it a springboard to discuss when your medical provider thinks are you faking or doesn’t take your pain seriously. When that person you are trusting with your symptoms and health causes more harm than good.

Let me start all of this off with the fact that I respect doctors and nurses and the difficult job that they have. They are juggling a lot. And the stakes for dropping one of those balls can be catastrophic, even when they have the best intentions. So this is not a generalization of all doctors. I have a lot of doctor friends who I love and know do great work. I have a science degree and am married to someone with a PhD in cancer biology. We love science, medicine and research. I wanted to be a doctor for a large part of my life. Then I got sick. Then I realized that the world I had been so ready to join was not quite what I had built it up to be. Doctors are people. They make mistakes. They have prejudices and preconceived notions. And if you do not fit neatly into one of their predesignated slots, they might try to force you in or just leave you where they found you. Imagine one of those toddler toys where you have the colored shapes that fit into the different slots. You have squares and triangles and circles, all with a nice little spot to fit in. I have sort of felt like a yet undiscovered shape in a garish color that hurt the doctor’s eyes. I will not claim to have had the worst interactions with doctors with the most damning of consequences. But I will detail some experiences that made me feel like a sad little shape no one wanted to play with.

The very first doctor I saw upon getting sick was one of the most despondent people I have ever met. I was still in the acute stages of my infection, so there was plenty to observe that was wrong with me: fever, enlarged lymph nodes, hacking cough. But she would never discover these things, as she never did a physical exam. She suggested that I might be pregnant and then left. Thankfully the nurse was kind enough to rush the pregnancy test and let us know right then and there that I wasn’t pregnant. The doctor never came back in. This was honestly such a blip on my health journey, that I’m not even sure it is worth mentioning. But this interaction does show how important primary care doctors are. They are on the front lines with their patients and are the first place for triage for patients experiencing chronic symptoms. Because of this woman’s attitude, I spent the next six months suffering, as I was too scared to go to another doctor and be so thoroughly dismissed.

About 1 year into being sick, I saw an immunologist. Once he ran his list of tests, he declared me healthy and sent a note saying he “hoped my symptoms improved soon.” There was no follow-up. No, “well let’s try this” or “maybe this specialist could help you”. He was not interested in exploring my symptoms further and made that pretty clear.

About 2 years into being sick, I had my next unsavory interaction with a doctor. Upon first meeting me, this doctor was actually pretty helpful. She spent a lot of time with me and asked plenty of questions. She was pretty sure that I had lupus, so she sent out for all the necessary tests. Everything came back normal. At my next appointment, she could barely be bothered to look at me. I tried to bring up ME/CFS as a possibility. She mumbled “maybe” before telling me I needed therapy. I sat in my car outside of the hospital sobbing. I felt so invalidated. I was sick of being sick and sick of going to the doctor, telling them how awful I felt, only to have them tell me all was well. After one round of testing.

I stopped seeing doctors for a while after this, save for my fabulous gastroenterologist. To be fair, I was the correct shape to be placed into one of his “slots”, but he was an incredibly caring doctor. Very thorough with my treatment and never mocked my questions about ME/CFS. He didn’t know a lot about it but was receptive to the research that I had done and seemed to think it a plausible cause of my issues.

My two most troubling doctor interactions came after we moved to Boston. At this point, I had the ME/CFS diagnosis from a specialist. But Brandt and I wanted to make sure we left no stone unturned in my diagnosis. To make sure there wasn’t another lurking condition that we could treat. I saw two rheumatologists 3 months apart. The first was a younger guy who came in quite bombastically. He wasted the first 15 minutes of my appointment showing me google images of old timey treatments doctors used to use on patients. He pulled one image up in particular with a label on it that read “for womanly needs” and ever so subtly suggested that was the one I needed. I don’t think I processed what he was saying until honestly this moment, as it was crowded out of my head by what happened next. Imagine that. Something worse than your doctor suggesting you had “female problems” that could be cured by snake oil. He asked me what my daily routine was like. He exclaimed in delight over how perfect my life was “I want that life! That sounds amazing!” He then continued “you are like a happy house cat” and then back over the google images to look up pictures of cat beds. He showed me one that had a warmer in it “your husband could put this in the car for you!” I am almost in tears typing this out. This doctor. This trained medical professional at an actual hospital was using the list of symptoms I had just shared with him to mock me. To belittle and invalidate me to the point I just wanted to run out. But I couldn’t run, as the physical exam was next. He told me that because my elbows weren’t hurting, there was no way I could have an autoimmune disease. When he did find a sore spot on my hip, he excitedly asked me if I was a runner. I said that I hadn’t been able to run for four years. He ignored that and explained that my hip was sore because I was a runner. He then said that he was running behind and left. Legit left me just sitting in the room on the exam table. No mention of a follow-up or any testing he might want done. I had to wander the halls to find someone who could show me back to the lobby.

Finding the first specialist I had seen to be somewhat lacking, I did some research and found this second doctor. The second rheumatologist was supposed to have some knowledge of ME/CFS, so I was hopeful that he would be able to help. I did not want a repeat of doctor 1, so I asked Brandt to come along with me. Replace weirdly chipper and mocking with wildly condescending and you get this second rheumatologist. An older gentleman, he spent the appointment across from us at a desk on a computer looking up random symptoms I listed and turning the screen toward us. When I told him about my fatigue, he began quizzing me on the most common reasons for fatigue, googling that and shoving the screen at both of us to gaze in wonder at his diagnostic skills. He ignored every medical journal article I brought up on ME/CFS. He dismissed positive test results and the recommendations from the CDC on treatment for ME/CFS. He told me that I needed therapy and to start exercising. I tried to explain that I had tried exercising in the past and had become worse off as a result, experiencing a significant crash. He told me that I had done it too quickly. I explained that I had done it over a year period. He ignored me. Back and forth we went until I was just too defeated to speak anymore. Oh and he told me that the inflamed, red rash on my face was acne and to see a dermatologist. I attempted to explain that I had tried to have a dermatologist treat my face, and it didn’t help. He dismissed that too. He then asked with a big smile on his face if I had any other concerns. I barely made it to the lobby before bursting into tears again.

All of these interactions have made me realize how strong of an advocate you have to be for yourself. To not be intimidated by your medical professional. To feel empowered to walk out of an appointment. I wish that I had. I wish that I had told these doctors how they made me feel and not subjected myself to their disbelief and mocking. Maybe your nurse or doctor will proclaim that you are faking and twerk their way out of the room. But that doesn’t have to discourage you to the point you start to doubt yourself. You know your body. You know when something is wrong. And yeah, there may be fakers out there in the world. But I don’t think that most are. Who would want to be repeatedly poked and prodded? Spend countless hours and endless dollars on this crap? And I can happily say that I have found a few wonderful doctors. It takes time and effort, but they do exist. They are often difficult to get into unfortunately, but the wait is worth having them in your corner. You are already battling your disease and pain. You don’t need the opponent recruiting the people supposed to help you.