A Diagnosis Matters.

While I certainly have plenty of experience in searching for a diagnosis, I’m not really writing this for myself- but rather, my friends who are undiagnosed and searching. Big hugs and love to all my chronic illness friends who are fighting this battle. I have your back, and I’m cheering for you.

Years ago, before my own chronic illness symptoms became as obvious, I accompanied a family member for a medical test. While I was waiting for my family member’s discharge, I started chatting to a nurse. She told me a story about a patient who had come in earlier in the week with vague symptoms. The doctor had ordered an upper endoscopy which came back showing no obvious problems. The nurse laughed sardonically as she told me how the patient burst into tears of frustration at the report. The nurse couldn’t fathom how a person could feel anything besides relief at getting a good report- and seemed convinced the patient wanted to be sick.
Even at that point in my life, when I had far less experience with being sick, this conversation grated on my nerves. I imagined the patient coming in- knowing something was wrong with his/her body- desperate for answers. I could understand the patient’s frustration in not getting the answers needed. The nurse, on the other hand, couldn’t understand why the patient was so upset.
Years later, now that I’ve battled my own set of vague and sometimes transient symptoms, I can feel that patient’s frustration so deeply. I’ve recently had an onset of neurological symptoms. My legs tingle- sometimes they just don’t work when I tell them to (which makes using stairs sometimes laughable and other times downright dangerous). My neurologist noted hyper reflexes on one side but diminished reflexes on the other. My bladder is a jerk. I’m basically a slow-walking neurological mess. And. . . there’s currently no obvious cause for my problems.
I’ve been through this before. It took years to find out I had EDS. I know that eventually I will find the right doctor who will order the right test to get me the right diagnosis. However, the truth is, I’ve fought this battle so many times that I’m growing weary of the fight. I catch myself cringing when my phone rings (and finding excuses not to answer), because it will be another doctor’s office, another appointment, another test. More needles. More side effects. More bills. (Did I mention MORE bills?)
So, as a person who has fought the fight for diagnosis for years- and will likely continue to fight for answers for the rest of my life- I want to make something exceedingly clear. It is not wrong or selfish to want answers. Just because someone wants to know the name of the illness plaguing them does not mean that person wants to be sick. They’re already sick and want answers.
If you’re still not convinced, think of it like this. Let’s imagine you’re standing around doing nothing- and completely out of no where someone punches you in the face. *BAM* You see stars. Your nose is bleeding. Holy moly, your tooth is loose. The assailant had quite an arm. By the time you come to your senses, the person who punched you is gone. You look around and have no clue who hit you. You cannot put a face or a name with what caused your pain. Are you selfish for wanting answers? No. Does searching for the person who punched you mean that you wanted to be punched? Of course not. No one would think you were strange or out of line for if you sought out multiple sources (ie. bystanders) to find out how you were injured.
Seeking diagnosis is very much the same. You’re suddenly sick, and you don’t know why. You want a name, a cause, SOMETHING to help you understand what is happening. That isn’t wrong. It’s human nature to seek a cause when an effect has occurred.
Friends who are searching for a diagnosis, I understand your struggle, and I hope only the best for you. Friends who have navigated this course successfully, I’m proud of you for fighting through this. Friends who are trying to understand why any of this matters, I realize that battles we haven’t fought ourselves are hard to understand, and I appreciate your kindness regardless. Please be patient with us- I assure you, we’re all fighting to be patient as we seek answers.
Peace, love, and health always.

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6 thoughts on “A Diagnosis Matters.

  1. Danielle

    Hi there. I know people ‘helpfully’ suggest stuff to us chronically ill people all the time & it gets irritating, but bear with me. I read this on the Mighty & saw you had Ehlers Danlos which made my ears prick up, particularly when you said you had other unexplained symptoms including bladder. I obviously don’t know what type of EDS you have, or what your other symptoms are, but that was enough for me to want to write to you. I don’t know if it helps to say also that I am a medical doctor. (I also realise you may already know about this, but am suggesting just in case!) My suggestion is to look into Mast Cell Activation Syndrome. It is very common, but ‘new’ medically speaking so won’t be common knowledge to your average dr. It is commonly associated with Ehlers Danlos hypermobility type & POTS, but also chronic fatigue syndrome, fibromyalgia, IBS, interstitial cystitis, Endometriosis, allergies, this list gets very long so I’ll stop here, but basically anything related to inflammation. I, as an example, have a number of the things on that list, but treating the MCAS has helped significantly. Anyway, not sure if that will be of any use to you but thought would share!

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  2. Sienna

    This post could literally have been about me. In my Senior year of college, I started getting really sick (vague symptoms though) and going through a lot of testing. At one point, the college nurse had to start going with me to my appointments because I didn’t have the strength to go by myself. After getting “normal” for the 14th time, I broke down crying on the ride back to campus. I was so upset, so tired, so weary of being sick but not knowing what was going on. 5 months later, I was finally given a Fibromyalgia diagnosis. While that’s not a good diagnosis to get, I was honestly way more relieved to finally have something “wrong” with me than upset with the diagnosis. Since then, it’s bee a journey to find a new normal and what works for me, but knowing what is wrong actually took away the majority of my emotional turmoil. It truly takes having “been there” to understand the agnony of a “normal” diagnosis.

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