How to Find a Diagnosis | Advice From Someone Living With Chronic Illness
As someone who went undiagnosed for ten months with a serious chronic illness, I know how frustrating and discouraging it can be to live with an undiagnosed health issue. In my case, it was chronic Lyme disease; it took me ten months of unsuccessful doctors’ appointments and back-to-back testing to figure out what was plaguing my body. Lyme disease, and other tick-borne infections, are notoriously tricky to diagnose. Although the lucky ones receive the typical bullseye rash and positive test result—leading them to be treated and often “cured” within a few weeks of antibiotic therapy—many like myself have a much longer and difficult journey to a diagnosis. Many chronic illnesses present a bizarre array of symptoms that can often be left unexplained by your run-of-the-mill blood tests, which may leave doctors dumbfounded and unable to find concrete answers. In turn, these patients are left without a clear diagnosis, rendering them feeling defeated, frustrated, and even hopeless.
At least that’s how I felt. I bounced from doctor to specialist, all of whom could not get to the bottom of the mystery that was my health. Test after test came back normal or negative, leaving me without answers. The severity of my symptoms only built over time, as did my anxiety and stress levels, leaving me desperate to find an answer. With each negative test result and unsuccessful doctor’s visit, others in my life started to question the validity of my illness. Maybe it is just stress. They’d say. Which felt like a nicer way of saying, Maybe it’s all in your head. I knew deep down that what I was going through was much more than a reaction to stress—that something serious was happening to my body. Yet without a diagnosis to validate my experience, I was left feeling incredibly discouraged and overwhelmed.
The day I received an accurate diagnosis was one of the best days of my life. My diagnosis provided me with an immense amount of relief and, for the first time in months, I felt a sense of hope. I finally knew what I was suffering from. Not only that, but I finally had a chance at fighting it!
For those of you struggling with any sort of undiagnosed health issue, I understand just how frustrating and confusing trying to find a diagnosis can be. For many living with any type of obscure chronic illness or disorder, it can be a long and difficult process to navigate. I figured I’d share my words of wisdom in hopes to clear up some of that confusion and provide you with some encouragement. Without further ado, here’s my unsolicited advice on how to find a diagnosis...
Track Your Symptoms
This is a simple piece of advice, but an effective one. One of the most useful actions you can take while trying to find a diagnosis is tracking your symptoms. Whether you are suffering from a long-term health issue, are experiencing a new allergy, or are simply noticing a new abnormality in your health, tracking your symptoms is one of the best insights into your health you can provide new doctors. Not only does tracking your health allow new doctors to receive a comprehensive account of your symptoms, but it also enables you to note patterns and weird abnormalities that otherwise may have been overlooked. Trust me, after months—and for some, years—living with the same symptoms, it can be easy to forget or discount certain details that may in fact be the key to your diagnosis.
Doing this was my saving grace, as it allowed my doctor to find patterns and note specific symptoms that were associated with Lyme disease. Chronic Lyme disease, sometimes referred to as late-stage Lyme disease, is characterized by an expansive combination of seemingly unrelated symptoms. Because it is a systemic disease—meaning that it affects multiple different systems within the body—patients can experience a wide variety of symptoms. Such range of symptoms can make their case even more complex and mysterious, which can make it that much trickier to find an accurate diagnosis.
I had recorded my symptoms in a journal and ended up walking into my last first appointment with a handful of pages full of a jumbled account of my symptoms. Since then, I’ve created a convenient symptom tracker and health journal template—check it out here, free of charge ;).
Trust Your Gut
I may as well have put this one first, as this is the most important piece of advice I can offer. It also happens to be a cliché, but since it is so applicable to health—especially when you’re navigating a chronic illness—it is one I could not avoid mentioning. And besides, clichés are clichés for a reason, right? There were many times where I felt like those around me doubted the experience I was going through. It was hard to find external validation in my illness without having it “officially” diagnosed. Maybe it’s anxiety? Well, all the tests came back normal? I can’t find anything wrong with you. From doctors to family members and friends, I faced people who questioned the validity of my health issues. It didn’t help that every test came back negative; even the most “reliable” diagnostic tools couldn’t provide me answers. When you are presented with so many reasons to question your intuition, it is hard not to doubt yourself. My biggest piece of advice when you face situations of doubt is to trust your gut. Only you know how you are feeling. Listen to what your body is telling you. If your gut is telling you that something is wrong, then something is wrong. Period. This advice also reigns true when it comes to doctors, therapists, and other medical professionals. When working with a doctor to diagnose and treat a health concern, it is so important that you feel validated and respected by your doctor. Unfortunately, I’ve heard too many stories about ignorant and dismissive healthcare professionals that simply don’t know how to handle chronically ill patients. I myself have experienced ignorance, arrogance, and rudeness from medical professionals. After waiting months to get an appointment with a specialist—and paying a hefty appointment fee—the worst feeling is walking into that office and being dismissed and belittled by an “expert”. To that, I say screw them! Do not let a negative experience with one medical professional determine your outlook. It may take getting a second opinion—or a third, fourth, or fifth—to figure out your health.
Finding a good doctor can in some ways be like dating; sometimes it may take a few strikes, trial and error, or even soul-crushing encounters, but eventually, you will find a doctor who you know in your gut will give you a fair shot.
Advocate for Yourself
For most of my life, I had assumed that doctors knew all the answers and that it was the medical system’s duty to take care of me. Little did I realize that, just like any other “system” in our society, the medical system is flawed. Due to those flaws, people fall through the cracks. Doctors “are people, too” and will inevitably have moments in their careers where they are unable to find the answers their patient needs. Unfortunately, when this happens, it can be all too easy for a patient to be brushed off and dismissed or tossed from doctor to doctor. In these situations, a patient may be forced to take control of the situation in order to get better.
Self-advocacy was one of the most important—and most valuable—lessons I learned from being sick. Never before had I needed to “go against the grain” and push back on the opinions of an expert like a doctor. Throughout my childhood, I looked to my parents to guide and fight for me. Unfortunately, it got to a point where they were at just as much of a loss for answers and direction as I was. It eventually dawned upon me that my parents and my primary care doctor were not going to be the ones to solve my problem. Although my parents were there to support me, there was only so much they could do. Realizing this, I knew that if I wanted a chance at getting healthy, I would have to take things into my own hands. I had to be my own advocate. This was a difficult and overwhelming task to take on, but without doing so, I would not have gotten diagnosed or properly treated. It goes back to trusting your gut. You’ll likely be faced with many people—be them family members, friends, or even doctors—who either don’t believe your experience or diminish it, whether they mean to or not. In these situations, you have no choice but to advocate for your health and wellbeing. If you don’t advocate for yourself, then who else will?
Take Everything with a Grain of Salt
When it comes to your health, it is important to do your due diligence—for me that entailed hours of going down the internet rabbit hole and reading multiple health and wellness books. After months of growing more and more ill, with no doctor or test able to provide me an answer, I became obsessed with finding a solution on my own. Google became my new best friend. Now, when it comes to health, the internet is a double-edged sword. On the one hand, I was able to access resources and anecdotes that ultimately led me to explore Lyme disease in the first place. Yet there is also a lot of negativity and misinformation on the internet.
Although it can be useful to point yourself in the right direction, help you find legitimate resources, and serve as a source of inspiration and hope, the internet can also be a place with trolls, horror stories, and straight-up lies. You’ll find a large variety of opinions about disease, many of which are biased and/or negative. Even credible sources can contain bias and false information. Both before and after being diagnosed, I found many stories, articles, and comments that claimed it was impossible to recover from chronic Lyme disease. Some even said that chronic Lyme disease didn’t exist. Upon reading information like this, I would spiral into doubt and panic. Being told that your illness is not valid or is impossible to overcome can be overwhelming. When you have no positive or hopeful information coming your way, these opinions can be heartbreaking. For me, it took a lot of courage and faith to push past such negativity and focus on the information that brought me hope. My point here is that there is just as much bull s**t online as there is accurate and credible information. When it comes to the internet, take everything with a grain of salt.
Keep an Open Mind
An open mind is the best way to approach health and medicine. This is coming from someone who had a classic middle-class upbringing where conventional western medicine was seen as the right and only option. After being failed by this part of the medical system—one that I had put my faith and trust in for my entire childhood—I turned to a more “alternative” sector of medicine. It was a Naturopathic Doctor who was able to provide me with an accurate and confident diagnosis, and who then went on to effectively treat me. Now I don’t mean to bash on the “conventional western medical system”. I acknowledge that there are many great and caring doctors who successfully practice more traditional forms of medicine. I also acknowledge that there are MDs who are able to effectively diagnose Lyme disease and other chronic illnesses. However, in my personal experience with a chronic illness, traditional medicine was not able to handle my case well. Seeking out an ND was the best decision for me.
The moral of the story here is to keep an open mind to the resources you use to get a diagnosis. The answer you need may be in an unexpected—and maybe unconventional—place. The same goes for treatment. Never once had I ventured down the path of alternative health before becoming chronically ill, but I can say with confidence that alternative and holistic therapies have been the backbone of my successful Lyme disease treatment.
Create a Network & Listen to Others Stories
Living with a chronic illness, especially an undiagnosed one, is an incredibly challenging and unique experience—one that can take a great toll you’re your physical, emotional, and physical wellbeing. It is likely that many of your family and friends cannot fully empathize with what you are going through. As much as they may try to support you and be sympathetic to your situation, if they’ve never endured a chronic illness first hand, they can only comprehend so much.
Like with anything in life, unless we have had firsthand experience, our understanding is limited to our observations, assumptions, and outside information. Unless your support network has experienced a chronic health condition before, they likely will have trouble understanding exactly what you are going through. Be it knowing what your symptoms feel like, understanding to what extent those symptoms take a toll on you physically, or understanding the extreme emotional and mental toll going through such experience has on a person—your loved ones may not know how best to support you or be able to truly empathize with your experience.
This is why it can be incredibly beneficial to create a network of people who are either going through or have gone through a similar experience. This can be in a form of support groups—both online or in-person—Facebook groups, or personal connections. Being able to share your experience and worries with someone who can truly understand them not only helps that experience to feel more valid and less overwhelming, but it also enables you to receive a different perspective on your situation that your loved ones may be able to offer.
Resilience & Patience Will Carry You Through
Like working towards success in any aspect of life, you have to be resilient and patient when searching for a proper diagnosis. You will inevitably hit roadblocks along the way. You may have to visit tens of doctors, take a multitude of tests, and put up with a lot of external negativity and doubt. You will likely feel overwhelmed, frustrated, and even belittled as you work your way through the medical system trying to find an answer. There will likely be times when you feel discouraged and hopeless. In those times, it is so important to keep pushing onward. I recognize that this is much easier said than done. Finding the motivation to “stay positive” and to “just keep going” is beyond hard to do when you are at rock bottom. Having been at rock bottom multiple times before, I can assure you that you are much stronger than you think you are. You are resilient. It may not be in the way in which you expected, but you will find that light at the end of the tunnel.
Lastly, be patient with yourself. The journey of living with a chronic illness and attempting to get a diagnosis is challenging and taxing. Know that whatever emotions you feel are valid. Know that there will be times when you feel like the worst version of yourself. There will be moments when you find it difficult to keep your composure and act with grace. It will be hard to stay positive. And that’s okay. Anyone walking in your shoes would have difficulty coping with such obstacles. You are going through a uniquely challenging experience, so do not judge or measure yourself as if your situation was “normal”. Be patient and understanding with yourself. As my dad would say: “be your own best friend”.
I hope these words of advice have brought you empowerment and encouragement. I wish you the best of luck on your journey to finding a diagnosis! Much love, Annie