A few weeks ago I shared the struggles I’ve been having with an undiagnosed chronic illness. I’ve seen four doctors since sharing with you the details about this mysterious illness that has plagued me since January of this year (though the more I learn the more I’m convinced I’ve been struggling with these things for years, maybe my whole life).
As someone who is very in tune with my body, when these symptoms began appearing out of nowhere, I knew something wasn’t right. I could feel it in my bones. Symptoms such as debilitating fatigue, constant low-grade fevers, shortness of breath, horrible nausea, weight loss, joint pain and stiffness, brain fog, intensified migraines, and many more that were unlike anything I’d experienced screamed that something was wrong.
But what did the doctors say?
I’ve avoided posting an update for the past two weeks because of this “diagnosis.” Because of the shame, embarrassment, and self-doubt I was shocked to experience after hearing those two words from three different medical professionals.
My psychiatrist encouraged me to consider the possibility it was my anxiety making my symptoms worse, not the other way around, and to up my antidepressant.
My neurologist emphatically told me this was anxiety and hyperventilation syndrome (even though she admitted two of my biggest symptoms, low-grade fevers and joint aches, wouldn’t fall under that). She went so far as to suggest I didn’t need to keep my appointments I had scheduled with other specialists, and urged me to find a psychologist.
An infectious disease doctor referred to my pristine blood work, explained how nothing constituted further testing, told me this was anxiety and also recommended I up my meds.
In this time I’ve been told 50% of people with my symptoms don’t get a diagnosis. I’ve been told to learn pain management. I’ve been told my weight loss and fevers practically mean nothing because they weren’t recorded in a doctor’s office. I’ve been told I would not get further help or a diagnosis unless my symptoms majorly progressed.
Thankfully, I didn’t buy it.
Not that I don’t take anxiety seriously. I’ve been battling with multiple anxiety disorders since my brain injury 11 years ago and know how debilitating it can be. Though anxiety can pop up out of nowhere and manifest itself in odd physical symptoms, it is a familiar companion to me. I know its triggers and effects on my body better than anything; I know how to recognize, prevent, and work through it. It shows outwardly through the same symptoms each time — nausea, dizziness, and sometimes a headache and insomnia.
That makes up only about 4 of the 20 symptoms I’m currently having.
To top it off, within the last six months, my anxiety had drastically improved. While I had been nowhere near “cured,” I could face social situations competently rather than crumbling within minutes. My mind felt clear in anxious moments. I coped through difficult situations with more control. I don’t say this alone, either. Ask my parents, my close friends, my brain injury therapists. They would tell you, and have told me, they saw the same improvement.
And so the question I kept asking myself throughout this six-month journey is why then, in that improvement, in the midst of becoming stronger mentally and physically, did I suddenly crash and burn?
It made no sense. Looking at my pattern of anxiety, I could clearly see any recent surges in anxiousness were due to the fact I had been sick for months with no answers, not the other way around. But no doctor could see it. No… no doctor would see it. I couldn’t help but feel deeply that a diagnosis of anxiety seemed small, an excuse, like an out when they couldn’t give me any other answers.
So, what is it?
My suspicions I shared in the last post of this being a tick-borne illness, particularly Lyme Disease, continued to grow. The more I read about the disease and the inaccuracy of the CDC testing for Lyme and other tick-borne illnesses, the more I began to doubt the system. Despite urgings from the infectious disease doctor not to continue down that road because Lyme has been “blown out of proportion” and “labs would lie” to me, I couldn’t ignore the hundreds of personal accounts I’d heard from Lyme sufferers who had gone undiagnosed for years, who’d had the same symptoms as me, the same negative results, and the same answers of “it’s anxiety.” I couldn’t ignore the medical professionals who have studied this disease and risk their careers to the point of losing their peers and practices in order to diagnose and treat their patients correctly for Lyme.
So, I made the decision to see a highly recommended Lyme literate specialist and pay out of my own pocket for the initial consultation and consequent blood work.
I’m not going to share my entire experience with this specialist until I hear back on test results. But it has been a very long time since a medical professional has taken the time to listen, consider, ask questions, and explain things thoroughly and clearly, and that is what I got from this new doctor. I left the appointment feeling confident putting my health into her hands and emotional that, for once, someone listened and I may very well be looking at a real diagnosis when tests results come back in three weeks. This specialist is certain she knows what’s going on with my body (and it’s not anxiety…), but if the blood work comes back negative she assured me we would still work together to figure out what this is.
It’s going to be hard to wait for so long. Yes, I can’t wait for a diagnosis. I don’t want to be sick, but I am. I don’t want a disease, but I want answers. For once in my life, I want to be able to look at something in the face and say, “YOU are what’s making me sick” and then prepare to fight.
I feel like I can face the next three weeks of pain and fatigue with renewed hope. I am so grateful to be surrounded with a support system of family, friends, and therapists who are on my side, supporting my reasons and decisions to pursue this further and aid me when my physical and mental strengths give out. I have been shocked by my renewed passion — a desperate need — to spend time in the Bible. My own strength has been crumbling but God’s strength has been right there to sustain me. Throughout my brain injury God opened my eyes and heart to others who have gone through mental illness, and once more He’s taking me on a similar journey through chronic illness. Do I wish I was healthy? Day to day, yes. But I already know from experience that trials such as these open doors and create beautiful experiences and opportunities, and I know there is a plan for all of this, too.