When Doctors Don't Believe Us
If I had a dollar for every time I heard of a doctor dismissing a patient’s symptoms, I would be pretty darn wealthy. I also have personally experienced the “it may just be in your head” suggestion by doctors myself, which caused me to take action into my own hands and be my own advocate, despite how frustrating it was to not be taken seriously.
Why don't doctors believe people with Crohn's or UC?
So, why don’t doctors believe us? Is it because there are so many other patients who truly “fake” their symptoms or make them up in their head? Is it because statistically speaking, we “shouldn’t” be experiencing these symptoms? Why is it so hard to convince our practitioners that we are, indeed, sick?
Let’s breakdown the first theory— are we not taken seriously because others have just ruined it for us?
An ER doctor not believing Crohn's pain
The first time I went to the ER with a flare in 2011, the doctor actually waved his finger back and forth in front of my face so that I would follow it while the nurse reached in to press on my stomach.
I instinctively grabbed her hands before she could reach me and flatly said to the doctor, “What was that for?” and he replied, “I wanted to make sure you were actually in pain.” As in he was actually distracting me because I may have been making up the pain (!!). Turns out, I had a golfball-size abscess on my ileum which resulted in a 3-week hospital stay, so good job buddy, maybe you should have taken me seriously and not wasted minutes of our precious time.
I told my sister, who is an ER pediatrician, about this unfortunate experience, and she said “They probably thought you were a drug seeker just looking for pain meds. We see that all the time.” This annoyed me terribly.
I am sure that there are patients who actually go to the ER looking for pain meds (which I cannot even tolerate because they make me terribly nauseous) but knowing that I have Crohn’s disease should have made them pause and begin to evaluate my symptoms as a flare before jumping to the thought that I may be faking it. Because I most definitely was not.
Pain and symptoms can vary from person to person
The other reason that doctors may not believe us is that it just doesn’t fall within statistics. They are trained to study numbers, stats, probabilities, and results in order to use deductibility as to what can be going on in our bodies.
However, there are always exceptions to the rule. In 2014, I had another abscess but it didn’t “look” like my last flare with an abscess. My symptoms presented themselves as a kidney stone, however, the truth was that I had an abscess that was pressing on my ureter that caused deferred pain in my back, thus feeling like a kidney stone.
Was it a stone? No. Have I had them previously, thus increasing the likelihood that it was one? Yes. But do I also have Crohn’s and have had an abscess in the past? Yes. Ok, then, I am not a statistic, rather than a human being where anything can (and does) happen so let’s look at the big picture before brushing it off as just something else.
Statistics mean nothing when it comes to our bodies, as they will do whatever they want, regardless of whether or not it falls within the “majority”.
We need to advocate for ourselves when doctors don't believe us
We explored a few reasons why doctors don’t believe us when we report our symptoms, but what should we do about it? The only thing that has worked for me is to continue pushing to get an office visit, get a second (or third, or fourth) opinion, demand blood work or imagining, and do not stop until given answers.
Only we know our bodies best, and no amount of schooling and exams can make doctors know what is going on inside of our bodies better than we do. So speak up and ask questions. If you are dismissed or given an excuse that you may be imagining it or everything is fine when you, in fact, know that it is not, then continue being your own advocate until you get the treatment and care you deserve.
Will you help us understand the impact of Crohn's & colitis by taking the IBD In America Survey (US only)?