Dead ends: how to survive misdiagnoses

Updated: Feb 24

My first steps to finding answers & how misdiagnoses are never truly "dead ends."


Ask anyone with an undiagnosed chronic illness and they will answer that in fact, one of the most discouraging and frustrating parts of the journey is trying something new, be it a new doctor, new medicine, or new lifestyle, and having it come to a "dead end."


With each new doctor comes the hope for answers. With each new treatment comes the possibility of breakthrough. When neither of them come to pass, we are left devastated and back to square one. It is emotionally taxing, discouraging to the spirit, and altogether heartbreaking. (Not to mention, the cost of the time spent to go to the doctor and money spent on the visit itself, plus whatever new treatment is prescribed - you better pray to God you have some BOMB health insurance because if you don’t, you might as well drop out of college now.)


The purpose of this article is to share with you all a short story on a surgery I endured. During a process I thought would heal me immediately, I humbly learned that it was merely a step in the right direction in what would be another two years of a longer healing journey. My hope is that by the end of the article, you can acknowledge with me that every closed door is truly a blessing, and that misdiagnoses are simply tools we can use to propel ourselves forward in finding healing.


From September to June of 2015, I had 7 sinus infections, pneumonia, croup cough, and bronchitis. That's a whole lot of unknowns in not a lot of time.


Clearly, with all of these sinus issues, my first step to answers was to see a good ole’ ENT - Ear, Nose & Throat Specialist. With 7 sinus infections in nine months and mucus coming out of my freaking eye balls (yeah - gnarly), an ENT was the best bet I had.


With one look, the doctor scoped my nose (aka put a tiny camera up my nose and into my sinus cavities - top 10 most uncomfy things I’ve ever experienced - don’t try it at home, folks). After seeing intense inflammation, he called for a CAT scan of my head to see just what we were looking at.


Ok - so what we're looking at above is a CAT scan of my sinuses before sinus surgery. See the black part? At first glance, my thought process was black = bad right?


NOPE. Lol... WRONG.


Black means empty space, which is, in theory, what my entire sinus cavities should look like. All those little pockets in and throughout my face should be empty and allow for circulation of air into my lungs and thus throughout the body.


Instead, my sinuses were gray, meaning filled to the brim (literally) with mucus and inflammation. This was a flashing red light telling my body I needed medical attention and STAT. So with mucus filled nose and eyes, I left a Cru summer mission I was attending in Breckenridge, Colorado and rushed to sinus surgery in Santa Monica, California where we broke the microwalls in between my sinus cavities, also known as sinus surgery.


X


To the left is the same image as above, and to the right was a post surgery CAT scan. THAT RIGHT THERE ARE SOME HEALTHY SINUS CAVITIES BOiiiiiiiiii!!!!!


Back to the point.


While the surgery helped me to never get a sinus infection again (and still to this day 4 years later - Praise God!), something was off. I couldn’t put my finger on exactly what, but I knew I wasn’t back to normal Jess. I must’ve thought that undergoing this surgery would just mean going back to square 1 - working out 6 days a week and eating raw eggs (ok maybe not the eggs, Rocky Balboa - calm down)... But that pipe dream was far from the case.


I was weak.


Though sinus infections were no longer a looming fear, I still got sick about every five weeks. Croup hit me four times a year now instead of once or twice. I felt tired and perpetually... Not well. My body had turned hypersensitive. Even though nothing was outright “wrong” - I couldn’t shake the fact that I simply was not well. What the heck? I thought the surgery was the answer? If my sinus cavities had been taken care of - sort of speak - then why wasn’t my sickness ending?


Little did I know, this surgery would only be the first step in the journey of the next few years of specialists, chronic rhinitis and chronic illness - products not of my sinus structure, but of the nine rounds of antibiotics in nine months prescribed by my doctors.


While the surgery wasn’t the answer, it wasn't a dead end. And I truly believe in the depths of my being that this motto is one of the most helpful ways to getting through any chronic illness or autoimmune disease.



For your journey...

What does this mean for you?


1) It is okay to not have all the answers.

There is absolutely no such thing as a dead end in your health journey. Think of it this way: in your search for answers, ruling out possibilities is just as important as finding answers. You simply cannot have one without the other. More often than not, the nature of this journey is a process of elimination.

And consider, most of the time with autoimmune diseases or chronic illness, the problem is never a quick fix or found in solely one area, but instead, a multifaceted, unique to YOUR body, kind of issue. For me, the surgery helped me to never get a sinus infection again, which allowed me to stop taking such intense antibiotics and steroids (and still, 4 years later, I haven't taken one antibiotic because of it). While this wasn't the "fix," this clearing of my sinuses allowed me a little bit of a clearer image to view what the real problem might be. With this, I was able to cross off the physical structure of my nose as the potential issue, and move on from there.


We live in a world of immediacy and instant gratification. When we want to know something, we pull out our iPhones and Google that ish. Boom: there's our answer. But when something unknown and undiagnosed hits a very personal and uncomfortable space - such as our bodies, minds, or spirits - and all the sudden we can't just Google/WebMD our problems, we easily become anxious, angry and discouraged.


Let's burst that bubble right now. In the holistic health world, nothing is instant. In fact, it's never a straight answer. What foods, exercise, products, herbs, etc. that may work for your body, mind and spirit now, may not work for your body, mind and spirit in five years. And the ones you find in five years will probably be different than the ones you find that work in forty years. We are shifting, changing, ever-growing beings. Why do we so often treat life and wellness like there is a one-track, one size fits all answer?


With a no, you’re one step closer to the yes. Though it may not be the answer, it is an answer, at least for now and in this moment.


2) It's okay to admit you need support. Ask for help.

Another important aspect to dealing with "dead ends" is surrounding yourself with a supportive and caring community. There is no way I could've kept going, kept pushing on from specialist to specialist without the support of my mother and community. With every doctor call, my mom insisted I call her right as I picked up the phone and merge the call, because who cares if the doctor has to wait an extra 10 seconds to give me my diagnosis? It mattered that my mom was right there with me to hear it, even though she lived 300 miles away. When I had 3 different specialist appointments in one day in three different parts of Los Angeles, my boyfriend at the time offered to drive me. He knew how emotionally exhausting it would be for me to see each doctor, and the last thing I would want to do is sit through hours of Los Angeles traffic. So he took the hit for me so that I could close my eyes in the passenger seat and just rest (spiritually, mentally, emotionally, and physically) before gearing up for the next appointment. It's okay to accept help.


3) Make friends who are also seeking holistic healing.

Likewise, a community of others going through a similar journey as you is extremely important. You need to remember that you're not alone, there's someone who's walked this path before you, and there is hope for deliverance. (Congrats. You're already halfway there by simply reading this post and familiarizing yourself with my story.) If you're looking for others' stories, check out my favorite book ever: The Wellness Project by Phoebe Lapine. Plus, chances are people who have walked the path before you will have wonderful advice, PLUS great food ideas/allergy friendly restaurant recommendations... #win.



4) Doctors are friends, not food.

Lastly, remember that doctors are humans too. Misdiagnoses suck - majorly. But they should almost be expected when seeing a doctor. I encourage you to befriend your doctors and be bold with your case. Share with him or her everything you already know about your case, even if it feels insignificant. Ask a million questions and take up every last minute of your allotted time - who cares? That's what your doctor is there for! Utilize their knowledge, yes - but remember they are human. Personally, I try to make it a goal to make my doctors laugh at least once every time I'm with them. This lightens the mood and allows the space between us to feel more like a friendly relationship than a cold hard, "here are the facts, now get out" kind of appointment.


Doctors are your friends, not your enemies. They don't want to give you bad news just as much as you don't want to hear it. So be bold and courageous in searching for answers. Be patient with the journey; I can almost assure you it will take longer than desirable. But it will be worth it. And oh, what you will learn....

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