Undiagnosed Patients Shouldn't Have to Fear Going to the Doctor

Today, while driving home from my bio lab, I got to thinking about my doctor appointments coming up – specifically my GI appointment.

I’m going to first explain what is going on with my GI tract to give a little bit of background.

For about a year and a half I have been struggling significantly with eating and digesting food. At first, my doctors were really concerned, especially after I began losing a lot of weight rapidly. After having my gallbladder removed and my symptoms still had not gone away, I had two endoscopies.

The first scope was done by my surgeon who had just removed my gallbladder a few months before. He was very concerned about me until after he had seen that my scope showed nothing abnormal. I remember he talked with my mom while I was in recovery and told her she needed to be watching what I ate, because he felt I had an eating disorder. That was the first of many accusations. I was absolutely livid. All I want is to be healthy and to be able to eat normally. Going out with friends and being with family during the holidays has become really rough. These things mostly revolve around the food! It’s so hard being around food you love and not being able to eat it – or knowing that if you do, you’ll pay for it later.

So, my surgeon then referred me to a regular GI specialist who diagnosed me with IBS, and then did a second scope.

I can still remember the day I got those scope results. I woke up in complete agony and fatigued. Fatigued was an understatement. I hadn’t eaten in days, and couldn’t sleep because of the pain. I spent the whole morning on the bathroom floor with extreme nausea and horrible stomach pains. I was retching with nothing coming up. All I wanted was for the pain to go away so I could get on with my day and not have to miss yet another day of school.

I heard the phone ring, followed by my mom’s footsteps. A few minutes later I heard her yell for me, and when I didn’t come, I heard her walking around trying to find me. I managed to sit up, and yelled to her that I was in the bathroom. She came in and told me that my GI had called with my results. When she told me they found chronic gastritis, I broke down into tears. Finally, they had found something to account for my symptoms! I remember saying to her, “I knew it wasn’t all in my head! They can’t try and tell me it is now.”

I was wrong.

At my next appointment with my GI, he diagnosed me with rumination syndrome, and referred me to a behavioral specialist. After he had done that, I was upset. After reading more about rumination syndrome and talking with some others who had it, I really didn’t feel that this is what was wrong. Too many of the typical symptoms just didn’t match up with mine, and it didn’t explain some of the other symptoms I have as well. I didn’t agree with his diagnosis and sought a second opinion.

These doctors I am seeing seem to be just the same.

 

I switched to Nationwide Children’s Hospital in Ohio because I heard they have a doctor there who specializes in rumination syndrome. They also have one of the top programs for it. I was already going there for other specialists anyway, so it seemed best. There, they added many more meds to my already long list and referred me to their rumination syndrome psychologist.

I decided to go along with it; after all, it was yet another doctor telling me this is what I have. I had nowhere else to go and thought maybe I actually did have it, and the psychologist could help.

I have just recently stopped seeing that psychologist because he’s switching locations, but at my last appointment he told me he doesn’t really think that I have rumination syndrome, and if it is what I have, it’s not a typical case. He says that, to him, it seems like it’s my nervous system acting up when I eat, causing my esophagus to constrict (which could be caused by POTS).

And this is where I am at right now. I still don’t really have any answers, and my symptoms have started to progress again. I am terrified I’m going to fall back to where I was last year. I spent months living off of Ensure and protein shakes, and even going weeks at a time without anything other than water. That point of my life is a bit hazy; I was constantly sleeping and can’t remember much of it.

Every doctor appointment I had at that time was upsetting, because every time I would be weighed, I’d see I had lost even more. Every single doctor and nurse I saw would congratulate me on it, even after I explained why it was happening. It felt like they didn’t believe I was struggling with eating just because I was overweight. I eventually did find a few foods I can tolerate some. I managed to stop the weight loss for a bit, which was my biggest goal.

Since I managed to stop the weight loss (or stop it from happening so fast), my doctors have been adamant that I continue to lose weight. They tell me if I do, my symptoms will go away. They also insist my abdominal pain is part of my AMPS (amplified musculoskeletal pain syndrome). But I know my body; I know this is not what is going on. The pain is completely different. And if it were AMPS, then why can I only tolerate softer foods?

I broke down while driving home today because I was thinking about all of this. I was trying to figure out what to tell my doctor so she’ll maybe finally listen to me. I feel stuck, like I don’t have anywhere else to go, and I am beyond frustrated.

So many people with chronic illnesses go through this cycle for years, before reaching a diagnosis, and sometimes even after being diagnosed. We shouldn’t have to go through this over and over again.

I want more than anything to be “normal.” We all do. We don’t want to constantly worry about whether or not certain activities are going to send us into a pain flare, or if certain foods are “worth” the pain (and they rarely end up being worth it). I want to be able to put 100 percent into my schoolwork, but it’s just not possible. I feel like I have reached my breaking point with my doctors.

When you have doctor after doctor telling you your pain or illness is in your head, you begin to wonder if it really is. You begin to question your symptoms. This can really take a mental toll on the patient. We begin to beat ourselves up. We begin to fear telling our doctors when something new pops up, or if a symptom we have is getting worse:

“Is my pain really that bad?”

“Am I making this all up?”

“Is it really all in my head?”

“Will my doctor think I’m a drug-seeker if I tell them my pain is getting worse?”

“Is my doctor tired of seeing me all the time?”

“Am I faking these symptoms?”

“Is this new symptom even worth mentioning? They’ll probably shrug it off anyway.”

This can be detrimental to the patient.

(I would also like to state that, yes, I do know our thoughts and emotions can cause physical symptoms. But that is not always the case, and when doctors are quick to assume so, it can really have a negative impact on the patient.)

Patients should not fear their doctors. Doctors are supposed to help their patients in their time of need.

This is what it’s like to live with an invisible/chronic illness.

So for anyone reading this who is going through the same or similar thing, keep fighting. You’re not alone. Keep pushing for answers. I know it’s hard right now, and you may feel stuck and hopeless, but it won’t be like this forever.

This post originally appeared on The Tenacious Pre-Med.

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