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“It’s All in Your Head?” How A Patient’s Health Suffers When the Medical Community Doubts Them

I was told I must be feeling good because I was wearing makeup

I was 82 pounds at 5 feet, 5 inches. My BMI was 13.6. I had been wearing adult diapers and throwing up almost everything I ate. I had only gotten out of the hospital a month ago after having 2 emergency surgeries. That was the first day I had worn makeup in months. I learned to never do that again. Apparently if you are able to sit in a seat and brush your face with some makeup you are fine. Ok…

A surgeon in the ER department argued with me that I still have a colon

I looked him square in the face and said these exact words: “I had a total proctocolectomy with an ileal-pouch anal anastomosis.” WHO HAS THOSE WORDS unless they’ve had that surgery!? Those are words no one just has if they don’t know what they’re talking about. He told me I was mistaken and must of had a resection. Finally convinced him to call my surgeon who told him I indeed do not have a colon. I have a very dilated small bowel due to my motility disease. Do you think I got an apology? 

I was told to eat a hamburger and get up and do some laps around the hospital

A surgeon I had never met before came into my room and told me there was no reason for me to be feeling the way I said I felt and that I need to eat a hamburger and do some laps around the hospital. He was upset he hadn’t seen me up and walking the hallways. The next day I was scoped by two other doctors and had a very bad results. He did come and apologize to me so I’ll give him credit for that. We had similar problems a few years later when he was mad I refused the Reglan he ordered for me without discussing it with me. If he had he would have know that it gives me long QT lines and I’ve tried it before without success. Of course I got the ol’ “patient refused” in my chart which never looks good on my part. I wouldn’t have had to “refuse” anything if he told me ahead of time what his plan was but instead a nurse came in while I was sleeping and hung a bag that gave me a reaction that sparked me to ask what she had hung.

When Doctors Doubt Their Patients

I wish I could tell you that I was exaggerating on the stories above but I am not, nor are they the only issues I’ve had like this. 

I will just start with this picture. Not even a week before I had this scope done I had been in to see my GI at the very poorly rated gastro department that I had been going to for many years because that was what my health insurance allowed. The only positive is that it was a 2 minute drive from my house. I had been in the hospital not even two months before this and during that time they refused to do anything more than an X-ray and give me fluids and pain medication. I didn’t want fluids and pain medication; what I wanted was for them to figure out what the problem was so that I could get back to my life. According to them I had ulcerative colitis, they removed my colon years ago, and now I was cured so there was no reason I should be having issues.

Due to the graphic nature of the photo below I turned the opacity down for those who are squeamish and don’t want to see the insides of my intestine. Hover over the image if you’d like to view it.

report from my endoscopy with 4 pictures of my jpouch and small bowel.
Sorry for the graphic nature but if you read the description that was the state I was in while being brushed off by the doctor

On this particular visit to my GI I told him about the quality of my life lately. I had missed the past week of work because I had become so weak I could hardly walk down the hallway to the bathroom and would have to hold the walls to steady myself. I pretty much laid on the couch in pain all of the time.

For the months leading up to this I was dropping weight rapidly even though I was taking in more than enough calories to sustain myself (I was keeping track). The weight loss while eating sufficient calories was a big sign to me that inflammation could be present in my small intestine since I have experienced this in the past. So at this appointment I told my GI how I was feeling: I explained the weight loss and that I was just above 100 pounds which is underweight for my 5’5″ height. I told him about the pain I was having and that it felt to me just like the inflammation I had when I had my colon. I was weak and dizzy and I just knew something was not right. Do you know what he told me? First he said, Well you look fine to me. Then he said he wouldn’t run labs (I requested blood work) because my labs looked fine the last time we took them (TWO MONTHS AGO!) and he sent me home with a prescription for tramadol and an anti-depressant.

They refused to do anything more than an X-Ray and give me fluids and pain medication. I didn’t want fluids and pain medication; what I wanted was for them to figure out what the problem was so that I could get back to my life

I felt insulted and defeated and so very angry. I walked to my car with my cheeks red and hot with anger and tears streaming down my face. It was a feeling of hopelessness because I needed to get back to my job. I was at risk of losing it and with missing shifts already I was losing money and also losing the faith of my co-workers as a dependable employee regardless of whether or not it was my fault. In that moment I felt like there was no way out of this mess if my doctor wasn’t going to listen to me and didn’t seem invested in helping me. 

Insanity is Doing the Same Thing Over and Over Again and Expecting a Different Result

I began this post with that picture above of my endoscopy because just a few days after that appointment with my GI I ended up with my hands and feet clenched up and I was unable to unclench them. I found out later this was caused by an issue with my electrolytes. I knew I needed to seek medical attention but I also knew that if I went to the same hospital I would get the same results: they would just give me fluids and pain medicine and wait for me to go away. I wanted more than that so I made a decision right then and there to have my friend drive me to the ER of a different hospital and do you know what!?

All it took was a scope and there it was: Crohn’s disease throughout my J-pouch and as far up as they could go with the colonoscope. 

This was not even a year ago as I write this. I was diagnosed with Crohn’s disease and was put on steroids initially and then began a biologic.

I was also put on TPN. All it took was for someone to listen to me and having a new set of doctors who did not know me meant they were looking at me with fresh eyes. My GI wouldn’t even run labs but these new doctors did the things you should do for any patient who has IBD and reports the symptoms I was reporting. A part of me wanted to rush back to my other doctors and shove the picture of my scope in their faces and say, SEE! I knew that I was sick and something was going on but I kept getting treated like it was all in my head. They called in psychologists to talk to me and they kept asking me questions trying to suggest this was something I was making up or at the very least exaggerating about. 

What Happens to Patients When Their Doctors Don’t Believe Them?

One of the worst things you could do to me as a patient is not believe me when I’m telling the truth. It insults my character and it is scary because I am looking to you for help. But more than that as a patient I am vulnerable with you. I pour out my heart and soul sharing with you things about my health not even most of the closest people in my life hear about. It is a privilege to have that kind of a relationship with a patient and if you don’t believe the words I am saying it’s a huge slap in the face. 

For a long while now I’ve had this anxiety that has caused me to become fearful of talking to my doctors because I worry they won’t believe me. I can’t stop looking at them and wondering if they are thinking that I am a liar as I tell them what I’m going through. 

green neon sign says it's all in your head

A Patient Will Jeopardize Their Health Because They No Longer Trust Doctors

During the 3 years that I was being brushed off by my doctor and hospital system I felt hopeless. Eventually I stopped calling my GI or my surgeon when I was suffering. I knew that they wouldn’t do anything for me anyway so why go in? This is what happens when doctors make a patient feel like they doubt them. They will lose hope and stop seeking help because they feel like they won’t get it anyway. They will become less likely to be open about their symptoms and less likely to follow through on their treatment plans. The relationship a patient has with their doctor is an important one and like I said earlier it should be seen as a privilege to have that type of relationship with a patient.  

I know it has to be difficult to be a doctor. I also know that there are people out there who do lie, or those who “hospital hop” and there are people out there who do come to the hospital for pain medication all of which makes it harder on the rest of us. I can also understand that if you can’t find an answer for someone’s problem I guess it is easy to start doubting them. I hope that as a doctor you haven’t become so jaded by those negative encounters with patients that it starts to affect the rest of the people who put their health into your hands.

Sara

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