Here's to All of Us Stuck in Diagnosis Limbo

Nearly all of us chronically ill folk have been in a sort of purgatory at one point or another. For some of us, we get trapped in this no-man’s land of being without a diagnosis right from the get-go. For others, our ever-increasing amount of unexplainable symptoms and complaints never seem to pan out to any answers, no matter how many tests we go through or how many other health conditions we can manage to rule out. I’m sure you can relate to that feeling of knowing that something is wrong but yet never able to be labeled with some all-important medical diagnostic term. The frustration becomes real. If this resonates with you at all, I welcome you into a little place I like to call “diagnosis limbo.”

For me, it started when I was a very little girl. I always had full-body pains and a colorful variety of other symptoms, but despite seeing nearly every type of specialist under the sun, they could never find anything wrong enough with me to explain what I was feeling. Eventually, as things got worse I did get a few diagnoses. I was satisfied with them at first because I felt like I was getting answers, and these new labels got me access to treatments that were able to bring me some relief. Unfortunately this all ended up changing.

In September of 2014, I ended up in the emergency room. I was there because I was no longer able to eat or drink anything. I was having agonizing stomach pain, intense nausea, and I was weak and dehydrated. They ended up giving me IV fluids and sending me back on my merry way home with an order to try to eat and drink. I tried with all of my might to eat and drink but I just couldn’t get a bite or sip in me that next day. That same night, I landed myself back in the ER in a worse state than I had been the previous night. The ER staff’s first task was to get me hooked up to my IV fluids. This ended up being their first challenge they had with me. It took four hours, five different nurses, and 13 painful pokes to finally get and IV in!

The second challenge was to figure out what was going on with me. My GI doctor was very surprised to see me there. The X-rays they had taken in the ER showed nothing abnormal, so he ordered some more tests and prescribed a new cocktail of medications. It was also determined that I’d have the honor to be bestowed with an NJ tube. I was kept in the hospital for a total of five days.

I was given the almost-diagnosis of possible superior mesenteric artery syndrome (SMA syndrome). It causes a lot of symptoms similar to those that I was experiencing. The diagnosis was never confirmed, but I ended up “eating” through my NJ tube for a rough two whole months anyway. Much to my dismay, my almost-diagnosis of possible SMA syndrome was later retracted when I started struggling to eat again about a month after.

A few doctors and nearly two years later, the second challenge continues. I’m still having significant problems with eating (along with more symptoms) and I’m still clueless as to what’s going on. I still have no diagnosis. It troubles me deeply. On top of that, since my only sliver of a diagnosis was retracted, I no longer have access to external feeds or any other possible traditional care or treatments that could help. After a while of going through all the tests, seeing all the doctors, and still not getting any answers, I’ve questioned my sanity more than once. I’ve spent long periods of time with distressing questions twirling around in my head. Questions such as: “Am I making this all up?” and “Will I ever get answers?” Not getting any answers really causes me to doubt myself sometimes, even though I know more than anything in the world that I are not making this up and that something is making me have all of  these debilitating symptoms. What makes it worse is when you start having doctors doubt you and give up on you.

This is how things are. I’m stuck in “diagnosis limbo,” at least for the time being. But, I have not given up yet and I will never give up on my quest to feel better. I remain patient and strong in hopes that someday the medical community will be able to give me answers. I also sincerely hope that someday they’ll be able to give all of you stuck in similar situations answers, too. Here’s to all of us stuck in “diagnosis limbo.” May we all stay strong as we wait for our answers.

Follow this journey on Alana Is Chronically Curious.

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.