When the Doctor Ignores Your Pain
We've heard from the community about doctor's ignoring pain or about doctor's dismissing symptoms of IBD. So, we wanted to hear from our advocates if they've experienced this and how it made them feel.
We asked them: Tell us about a time when a doctor ignored your pain. How did you feel? What did you do?
Do doctors ignore the pain from Crohn's or UC?
My doctor only believed in gas pain
Brooke: My whole treatment while living in San Antonio was awful. I was seeing a doctor who was a GI and not an IBD specialist, but he saw IBD patients. He didn’t believe in pain medication. He simply prescribed gas pills. He insinuated to my son’s father that people living with IBD only had gas pain. It made me feel like I was making it up in my mind.
I felt small and useless as a parent, spouse, daughter, sister, aunt, and friend. I believed my doctor. My partner believed my doctor. My parents believed my doctor. And I was battling myself without realizing it.
I had no resources or tools to help get out of the spiral I was in. I was fortunate enough to have had a mother who recognized that something was wrong, intervened, and sent me to a specialist at an IBD Center in Los Angeles. When I finally got proper pain management, it was amazing how I could function.
Ignored by the doctor because I didn't have weight loss
I felt like I was going crazy and believed that perhaps it was 'normal' for me. It took 12 years to get my diagnosis and I wish I'd fought harder.
Doctors told me it was all in my head
Amanda: This is actually the easiest question for me to answer, unfortunately. It took me several years to get diagnosed with Crohn's disease, and during that time I saw more doctors than I can count. Each of them ran some labs, listened to me talk, and then told me that it was "all in my head," "anxiety," "an eating disorder," or "a nervous stomach."
I cannot tell you how harmful this was both for my physical health, and for my mental health. I felt like I was two inches tall, and that nobody was ever going to help me.
To this day, even though I have actively been on a biologic for my Crohn's disease for almost two years, I still feel nervous about speaking to new doctors in fear that they will not believe me or ignore the severity of my health issues.
Labeled as a hysterical teenager
Jamie: I was 15 when my IBD symptoms were in full swing for the first time. My mother had a private conference with the doctor and asked if it could be Crohn’s. He said my pain was on the wrong side. I was passed off to a colleague who was a GI and yet again my symptoms and pain were disregarded as he labeled me a typical hysterical teenager girl.
I was given a mood-altering muscle relaxer as a bandaid, at the tender age of 15. In turn, I avoided GIs and most doctors until after graduating from college, because I could no longer ignore the blood loss. The experience from my younger years left me feeling less than human for my entire high school and college years.
I was told that I needed to control my pain on my own
Marisa: When I saw a rheumatologist my GI referred me to and began explaining to her the pain I had been experiencing in my joints and back, she initially seemed like a real human being who understood.
Because of that, I felt comfortable continuing to share everything I had been dealing with over the past year or so. I was looking for answers, knew she was intelligent and was hoping she would be able to help me put the pieces together.
After listening, she asked me if I had ever tried “moving my pain to the left side.” She then proceeded to tell me I needed to stop going to doctors and gain control of whatever pain I was experiencing on my own because there was no other option for me.
I smiled and walked out, waited until reaching the elevator, and burst into tears. I will never forget how completely hopeless that doctor made me feel.
Not taken seriously in the ER with pancreatitis
Kelly: When I was in the emergency room 5-10 days before I entered the ICU due to sepsis and pancreatitis, I was told repeatedly that my pain was psychosomatic and my mother needed to do better at managing my emotions.
The ER actually let me leave with pancreatitis, which came very close to killing me. Because I was a girl, I received several sexist comments from both men and women in medicine. It wasn't until after an exploratory surgery that I was taken seriously. ICU seriously.
A doctor prescribed the wrong medication for me
Britten: I went to see a local GI doctor after moving to a new state because I was in a ton of pain and I could tell something was just off. After going over my health history and my symptoms, she prescribed a suppository.
Immediately, I told her I couldn’t take that type of pill because I had a total colectomy 2 years earlier, and she said she would prescribe something different instead. When I went to pick up my meds from the pharmacy, I realized that she had sent the script for the suppository.
I was annoyed and in pain, so sent her a quick MyChart message reminding her, again, that I could not physically take that type of medicine. I have no rectum and there’s literally nowhere for it to go! Her response was an explanation of how to insert the pills.
After that, I lost all of my trust in her and felt that she wasn’t very competent. Honestly, I was scared to leave my health and wellbeing in her hands, especially if she couldn’t even grasp something that simple (and obvious). Needless to say, I decided to find a better doctor ASAP.
Feeling helpless and angry when a doctor wouldn't listen to me
Paul: I remember being really sick when I had my fistulas. I remember the bile would spill out of my wound and onto my skin. Bile is very acidic. I used to cry from the pain.
I remember telling a doctor how much pain I was in. He was a resident and didn’t have the time to listen to me. So I threw a gauze soaked with bile at him.... oh well. I felt helpless and angry!
What is your comfort level disclosing your IBD to your employer?