When Doctors Don't Give You Answers in the Search for a Diagnosis

In November 2013 I got my expectedly horrible period, but this time the cramps I was all too familiar with from the past eight years didn’t go away once it ended.

As anyone suddenly facing pain everyday would do, I started seeing doctors and explaining my symptoms as best I could without seeming irrationally upset or angry. It didn’t take long for me to realize I was nowhere near an answer. It’s amazing how your looks, age, gender and mannerisms can all too easily lead to a cold, doubting response from a doctor. Here’s the gist of just a few of the quotes that have stuck with me:

“Oh, but you’re so young, I really don’t think this is chronic, honey.”

“Most people with chronic pain have extreme anxiety and depression, every time I’ve seen you, you have a wide, contagious smile on!”

“It’s a good thing nothing is showing up on your tests — it means it’s not something that bad.”

“I understand, but I think you would best benefit from someone who can help with any psychological symptoms that could likely be causing the pain.”

I find it heartbreaking that because I can wear a smile, makeup and cute clothes, the one person who is supposed to believe in my pain is blind to it. It’s called an invisible illness for a reason. I try not to (over)react when strangers are not considerate due to their lack of knowledge, but my doctors have a ton of my health information to reference and in general they have dedicated their lives to bettering the health of their patients, but they instead choose not to acknowledge my pain’s true “physical” existence.

Last fall I finally met an OB/GYN willing to listen to my story and gradually eliminate possible diseases until we could find the answer. Two CT scans, an MRI and more than five ultrasounds later, there still was no glaring issue. It wasn’t until I was hospitalized for three nights for what was thought to be appendicitis that I decided I was ready for the only real way to find out what’s going on in my abdomen: a laparoscopy.

So, two weeks ago I had my first exploratory (intended-to-be diagnostic) laparoscopic surgery.

Fast-forward to around 11 a.m. when I woke up from surgery…

Despite being in a post-anesthesia state of mind, and as much as I’d like to forget hearing it, I distinctly remember the smiling surgeons leaning over my bed reassuring me that my abdomen was “pristine” and there was not a spot of endometriosis (the disease I had researched more than I’d like to admit, to which I was aligning my symptoms, and that I expected to be found and be my “answer”). They removed some bowel and appendix adhesions that were present, but also let me know there is no way of knowing what caused the adhesions, if they would come back, or if they were the source of the pain. So I left the hospital with three new scars, puffy eyes, and the feeling that I had somehow taken 10 steps backward towards finding my answer.

I went into surgery hopeful of creating a “new normal” for myself. I expected the surgery to shift what I knew as feeling “normal” for the past two-and-a-half years to something better, but it looks like I just have some more searching to do. I’m not expecting it to be easy, but I know I deserve an answer and I won’t stop pursuing an answer until I find it.

“Don’t predict your future, create it,” a motto I’ve lived by for years, is a perfect mindset for a situation like this. I hope others recognize the strength and resilience it takes to remain hopeful of a better future in the darkest of days of pain, as well as remember that we are all deserving of the happiest life we can live — it’s just up to us to ensure we live it.

The Mighty is asking the following: Describe your experience of not quite fitting under one specific diagnosis or a label your community identifies with. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

Find this story helpful? Share it with someone you care about.

Related to Chronic Pain

silhouette woman making heart shape with sunset

When I Stopped Longing for the 'Perfect' Life I Thought I Lost to Chronic Pain

Some people with chronic pain look back at their lives prior to their illnesses with such nostalgia, pride and infallibility. It is as if their lives were the picture of perfection with nothing and no one to hold them back. They may forget the embarrassments, shortcomings and utter failures they previously experienced, and in their eyes, [...]
Caroline standing outside with her crutches.

When I Realized I Don't Have to 'Get Better' to Be OK

It started with a minor injury. Two years and three surgeries later, I found myself disabled at 25 and in chronic pain. It wasn’t supposed to happen like this. For two years I had put my life on hold, waiting to get better. It finally hit me — I wasn’t going to get better, and [...]
woman watching the sunrise

How I Found Hope Again Despite My Chronic Pain

I started to re-examine hope only after I began to lose it. I had been dealing with undiagnosed chronic pain for numerous years, and my belief that I would ever find relief began to wane. Chronic pain was an unnatural occurrence for me to try to deal with, and I naturally hoped for relief. Hope is [...]
couple dancing at wedding

The Parts of My Illness You'll Never See By Looking at Me

My brother got married last weekend. I almost couldn’t make it, but I ultimately did. I danced with him at the reception while the best man had his wife. I almost didn’t get up, but I eventually did. The song was halfway through, but that was as long as I could last even with his [...]