I started Living Chronic because I wanted to share what I’ve learned over 10 years living with Crohn’s disease and after 19 months suffering from a severe reaction to Humira without proper diagnosis. I knew there were many people out there, just like me, who have suffered through misdiagnosis or severe reactions. Since I started the podcast and blog, I have spoken with many people either suffering from chronic disease or supporting a loved one with a chronic disease. In this short time, I’ve already discovered a common theme. No one feels comfortable challenging the doctor. It’s difficult to stand up for yourself, especially when you don’t have a medical background. As a matter of fact, a medical background doesn’t necessarily make you immune to misdiagnosis or a fear of standing up to your doctor. I spoke with a medical doctor who experienced a reaction to Humira that lasted a little over year without diagnosis and my friend Kelly Hof, who is featured in my latest podcast episode, is a registered nurse who admits that it’s easier for her to advocate for her patients than it is to advocate for herself in a medical setting. What is it that makes advocating for yourself so difficult?
I’ve spent a lot of time thinking about self-advocacy and what makes it so difficult. The first thing that comes to mind is how we practically canonize medical doctors. “The doctor said” is virtually a doctrine immune to scrutinization. If the doctor said so, he or she must be right. Or are they? At least 12 million people end up with the wrong diagnosis each year and women and minorities are 33% more likely to receive a misdiagnosis than other patients. The American Medical Association estimates that more than one in three physicians, 34%, have had a medical liability lawsuit filed against them. To make matters worse, a Johns Hopkins study states that more than 250,000 people die every year from medical errors. These numbers certainly don’t support the theory that doctors are infallible super humans that shouldn’t be questioned. There must be more to this. Why aren’t we standing up to doctors?
One reason could be that these mistakes are preventable, and, on some level, we all know it. I’ve already learned through my own research that medical professionals are overwhelmed, overworked, and in many situations, underpaid. The U.S. does very little to address shortages in the medical industry and the strain is showing. It’s no surprise that otherwise knowledgeable and caring medical professionals are misdiagnosing patients. I find this explanation to be the easiest to digest. It allows me to continue believing some level of superhero status of doctors, they’re just human so it’s no surprise they make mistakes. But what about women and minorities being far more likely to be misdiagnosed? First, women are often taught to listen to the authoritative figure in front of us (in this case, the doctor) and do what we are told. I also find myself feeling inferior and it’s not because I studied business and political science instead of medicine. Being a patient, especially a chronically ill one, is a vulnerable position. When a medical professional starts talking down to me or telling me that I don’t understand what is wrong with me or it must be in my head, depression or (and this one is making far too many appearances in my medical visits) just perimenopause and I should take a nap, I feel even more vulnerable and exposed than before I made the appointment. As a matter of fact, it deters me from making further appointments. There is nothing worse than being told that your very real pain is just made up. Doctors seem at the ready to do this as well. It’s as if it’s a tool in their toolbox. I was even chided by a veterinarian, the doctor for the dogs!!!, recently for looking for less expensive teeth cleaning services for my three Pomeranians. The price has gone up more than $1000 in the last 3 years. I was told that I just didn’t understand the estimate because there were medical terms and medicines I could never understand. The estimate. The same one I’ve been getting for my dogs for 20 years. No, I understand it just fine. Thank you. There are many other factors such unconscious bias, lack of research on medical conditions affecting women and people of color, and cultural norms but whatever the reason, we need to stand up for ourselves because these numbers and studies prove what you may not be ready to accept as truth, you know your body and the doctor may be wrong.
We need to find our voice, our confidence. The doctor is not an infallible being and yes, your pain is real. I’ve had to learn this the hard way. I was fortunate to have an amazing doctor who diagnosed my Crohn’s disease. Since then, however, I’ve seen first-hand how inept a medical professional can be. First, I experienced a severe Crohn’s flare that took nearly 2 years to get under control. In hindsight, I’m shocked more medications weren’t tried, especially since Stelara (started after the Humira reaction) has gotten me in remission, symptom free remission no doubt, something that remained elusive for the duration of my disease. The reaction to Humira is obvious. You can’t tell me this is super rare when each time I tell someone what I went through, I hear a personal story of someone they know who, or they themselves, had the same reaction. Even after discovering the reaction and discontinuing Humira, my fight was not over. I found a new GI (for obvious reasons) who made me wait 3 months to get a colonoscopy before prescribing me a new treatment plan. In this time, my Crohn’s became very active and was so bad that I couldn’t leave the house. Why wouldn’t a patient with nearly 10 years of records showing Crohn’s disease be treated immediately? Well, after the colonoscopy, this doctor declared that I was perfectly healthy. This was my first opportunity to practice some of my newfound advocacy skills and I went to get a second opinion. The second opinion found scarring from numerous Crohn’s flares (shocking) and had a 2 page report on various issues found. I was given Stelara and just 8 weeks later, I was in remission. It’s almost as if six previous GI doctors’ diagnosis of Crohn’s wasn’t wrong. At this point, I knew doctors weren’t always right and I had learned to fight. These are lessons we all need to hold dear. The doctor might be wrong. You have a right to a second opinion. Make the appointment. Make another one. Demand you see a specialist. Bring a friend. Just because you didn’t go to medical school, doesn’t mean you don’t know when something is wrong. Stand up. You are worth it.