Undiagnosed
The entire world can understand that it is difficult and stressful to live with a chronic illness, but only those who have walked the long road to seeking a diagnosis know how difficult the “undiagnosed” journey can be. Sometimes, it can be harder than life after diagnosis. Uncertainty by itself is incredibly stressful. If anyone around you is doubtful of the reality of your illness, it can be overwhelming.
My process of actively seeking a diagnosis lasted roughly two years. There were subtle signs of disease 6 years prior to that. This is just a brief description medically of my “undiagnosed” road: ER visits with mysterious illnesses in college, a spinal tap, a lymph node biopsy from a surgeon who made me feel like I was nuts, a tonsillectomy and adenoidectomy, countless rounds of antibiotics, hives from the antibiotics I found out I was allergic to, and roughly two years of my life where I was so exhausted that I felt like I was barely alive. I didn’t have a diagnosis in my chart, so urgent care doctors treated me like I was exaggerating to get a sick note to get out of work.
Every time a doctor has a new idea to run with, it gets your hopes up or it scares you half to death. I was evaluated for lymphoma more than once due to the persistent swelling of lymph nodes. The first time was terrifying. Revisiting that possibility was even more miserable. There were numerous other ideas that came to mind: some terrifying in their degenerative effect on health; some, a diagnosis of exclusion that could take years to get to the bottom of; some, without any hope of an effective treatment. When the lab results for those ideas inevitably come back as “normal,” you don’t even really feel relieved. Let me explain. When you feel physically normal, you may feel relieved to know that your health is in order. When you feel so unwell all of the time, there is no relief in the fact that science cannot figure out why. It isn’t that you want something to be wrong; it’s that you already know something is wrong, but nobody can figure out what it is. The neurologist that examined me for overwhelming fatigue spent the vast majority of an entire appointment trying to convince me that I was probably just depressed, because I was close to tears in his office when he said all my labs came back normal. In reality, he was the sixth specialist I had seen in a few months’ time, and I was just desperate for someone to know what was wrong.
You may even start to feel some guilt for not feeling relieved when labs come back normal. You start to doubt your own body and whether you are imagining the whole thing. You feel guilty for lumping yourself into the same categories of people who have “actual” diseases. It’s a bit of an imposter feeling. Here’s the thing though: there are a lot of diseases out there that are difficult to diagnose. Not every disease presents the same way in every patient. The symptom that may give the biggest clue to your diagnosis may not have even reared its ugly head yet. Perhaps it is a more defined pattern of clues that needs to appear. Don’t give up your search, because scientifically-speaking, the odds are that you are not imagining things at all.
Chronically yours,
Jen
