The Frustrating Reality of Visiting Doctors When You Have an Undiagnosed Illness

I grew up around doctors and nurses, as my mom was an emergency room nurse for years, and she is now studying to be a Nurse Practitioner. I grew up with a great respect for and trust in the medical community, because I truly believed all of them wanted to help people, like my mom’s friends did. I believed they would listen and care when I came to them for help. But after being chronically ill for years, my mom was surprised to hear I have a great deal of anxiety about seeing doctors now. She wondered why, when I’ve always spent so much time around the medical community. But today my mom got a taste of what life is like for a patient with chronic illness, and she was shocked by what she found out.

I’ve had chronic health problems for years, but they seem to have gotten worse over the last couple of years. I seem to be stacking diagnoses and my laundry list of symptoms is growing longer and longer. My mom has been desperate to find me answers, or more accurately to find me some diagnosis we could at least treat. But after years of doctor appointments, blood work, X-rays, MRIs, CT scans and more tests than I can even remember, I have been much less hopeful than she has been. She thought we had finally found a diagnosis that could be the root cause for my other medical problems, and went with me to see an endocrinologist in search of answers.

 

I had a laundry list of symptoms with me, and I hoped the P.A. would take a step back and look at my overall health in search of answers. But instead, she did what many other doctors before her have done, and she zoomed in on only one tiny aspect of my health. I tried directing her towards the other symptoms I was concerned about, but she seemed not to be listening. I told her I was hoping to find a root cause of my symptoms. And she looked me directly in the face and said, “It’s called PCOS.”

I was flabbergasted, and unsure of how to respond. I was diagnosed with PCOS about four months ago, and am currently being treated for it. However, I’ve done a ton of research on this diagnosis and it would only explain a small fraction of my symptoms. I was mostly shocked because of how dismissive she was, as if she was unwilling to listen to the vast list of problems. Instead she had spent most of my appointment looking over the lab work I had brought with me. Like a typical doctor, I felt she would ignore my symptoms as I didn’t have many irregular labs to give her direction. She didn’t seem to care how I felt or what symptoms I described, only what she saw in black and white.

I was at least able to get out of the office before I broke down in tears. I explained to my mom that this was why I could not hope for a diagnosis, I could not hope to find a cure, because having your hopes dashed time and time again and having your symptoms dismissed over and over is soul-crushing.

But I comforted myself that she did at least order the test we specifically requested. I hoped that maybe, just maybe, for the first time in my life my lab results wouldn’t let me down and they would actually point to a diagnosis of some kind. I decided to give this P.A. one more chance, as we all have bad days. Maybe once she had the lab results in front of her, she would actually listen to me.

Well, I did a 24-hour urine sample to rule out high cortisol levels (and the possible diagnosis of Cushing’s). I collected 4,250 mL of urine in 24-hours; my mom told me a normal healthy person would top out around 2,000 mL. My mom, ever my advocate, began doing some more research. She said having that much urine output in a day was ridiculous, and it pointed her in a direction of a different possible diagnosis (diabetes insipidus) that might explain why I’m constantly thirsty and constantly having to pee. Even the phlebotomist was shocked by how much urine I collected, especially when I told her this was pretty much a typical day for me. I drank over seven of my water bottles over the course of the day. My glass contains 24 oz. of water, and I went to the bathroom 30 times. This was completely normal for me.

Again, I began to hope that maybe, just maybe, we had found a possible answer for some of my odd symptoms. It might not explain everything but perhaps could point me in the right direction.

Then it came time to go back for my test results. My anxiety was running high, as I knew the P.A. had not been a good listener on my first visit. I was just hoping beyond all hope that she found something. She said my cortisol levels were perfect. I told her I knew I should be relieved, but I was discouraged, as I had been really hoping we would find something wrong we could actually treat.

Again the doctor said all signs pointed to PCOS. I asked her about my urine output. Because, I have yet to read anywhere that those symptoms are common with PCOS. She replied that “maybe I just drank more water that day,” even though I told her this was a normal day for me, and my mom added in that I am always thirsty, always drinking water and always feeling dehydrated. She refused to listen, refused to look into any other diagnosis. It was simply PCOS and that was that, and she wanted me to come back in three months for a follow-up. Of course, I have no intention of ever going back to see her. My mom was beyond infuriated. She was shocked to see a medical professional be so completely dismissive. She couldn’t believe she would refuse to listen to what I’m going through. She couldn’t believe that even when we confronted this P.A. with the symptoms that do not fit the diagnosis, she still refused to run any further tests or even consider that her diagnosis could be wrong.

And I told my mom that this was exactly what being a chronically ill patient is like. This is a common experience for those of us who have rare or unusual illnesses, or who have health problems that won’t show up on the normal lab work. Doctors frequently dismiss and ignore us even though we know something is definitely wrong. Doctors often refuse to listen to our research on possible diagnoses, or concerns about the diagnosis they have given.

This is only a tiny peek into my everyday life. This is why I have to be my own advocate and do my own research: because I refuse to be ignored and dismissed. And I know good doctors do exist who do care about their patients and will try to help.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via PhotoBylove.