How I Turned Snarky Remarks About My Condition Into Validation

I entered a medical study for undiagnosed individuals a few years ago. They asked me to write a paragraph about what I thought the doctors needed to know to be able to understand the whole picture of me and my condition(s).

I was lucky enough to partake in the creation of my medical diagnostic journey – the one with all the jargon, latin words and rows of numbers. All my clinical bases were covered. They wanted to know more about me as the patient.

They asked for a paragraph, and of course I wrote a whole page. It was tempting to write about all the ways I have overcome trials and tribulations (which I have) and why I am special enough to be in their study. I wanted to prove I was worthy of the time required to diagnose whatever I deal with on a daily basis.

And then I realized how ridiculous that was. More importantly, I realized that my default reaction of defensiveness and forcing validation would likely hurt my chances at receiving help.

Either they believe me, or they don’t. Either they can help me, or they can’t. And their reaction to my life is outside of my control.

So I could have just left that part blank. I could have submitted my application without the human part of my story. I could have let the blood draws and imaging summarize me.

But, being that you are reading my story, you know that’s not what happened.

I didn’t end up being accepted into the study (they have a high bar for abnormal!). However, I was able to express and give meaning to all these non-clinical remarks I have been given over the years. I was able to create a story out of the scattered lab reports and SMIL disks. Even though I don’t have a label, I began to form a definition – some kind of unifying theme that I had not noticed before, new insights into a part of myself I often gave up on understanding.

After being denied from this study, I paused in my journey. I did not give up; I merely gave myself a rest. Since stumbling upon this letter, I have reinvigorated my search for a diagnosis. So while this story may not have an end, I believe I am close to the climax.

If you have paused your diagnostic journey, I hope you feel the fellowship and camaraderie to know you are not alone. If you are ready to press play on your journey, hopefully this letter will inspire you to put up with doctors again, even if just for a little bit.

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To Whom It May Concern,

I was told I was able to write a paragraph to this study and its researchers about other information that may not be included in my medical records or that I wanted to highlight. I am tempted to highlight every little lead that I feel other doctors dropped or every other aspect about me that is not in the charts and graphs that summarize me. However, that is neither clinically helpful nor relevant. I was lucky enough to be able to partake in the creation of my submission letter so I feel my diagnostic journey has been pretty well described. However, there were a few pieces of advice or information that have stuck with me over the years, but can’t be well stated in a formal letter.

Many doctors comment on the longevity and variety of symptoms in some capacity. The caveat to this is that I don’t remember many of the conversations. While this may seem like just a list of snarky remarks, I feel that they encapsulate my medical state quite well:

• “We have run out of tests to run” – World renowned hospital chain after running a full neurological battery
• “I’ve never seen this before” – Physical therapist
• “Your nerves are beat up” – Urologist
• “Your results are not abnormal enough to do anything about” – Neurologist
• “With your history, you’d think we’d find something” – Genetics counselor

There seems to be a consensus that there are aspects, whether bloodwork or other testing, that do not portray typical results, but also don’t fit into the black and white boxes provided by current medical science.

Although I have little to no medical knowledge, the comments from a variety of specialists (neurologists and otherwise) suggest a neurological component. This is also consistent with learning differences, vision problems and other “leftover” neurological symptoms that were not fully addressed by speech, occupational and physical therapy. Out of all the paperwork I was able to gather, I believe these issues early in development best characterize my greatest concerns, but are also the least well summarized.

Whether because these issues seemed irrelevant to the symptoms any particular doctor was trying to solve or because there was no good way to address them, these pieces never got addressed to the extent I feel they should have been. Chronic pain has been chased after as the primary symptom because it is the most tangible and cannot be adapted for in the same way as other symptoms. While I would appreciate any kind of pain relief, I don’t believe that it is the key to understanding my condition. I also understand that any cognitive differences are most likely not something that can be solved, cured, or fixed. However, being able to put these symptoms in a larger context would be greatly appreciated.

I am currently in a Master’s program in psychology where research is an integral component. I hope, if nothing else, I can contribute to the greater body of research in some way. That being said, I would be quite excited to understand more about the origins, prognosis or any aspect of the condition(s) that I have been dealing with. I am debating whether I should pursue a PhD; while I refuse make my health the determining factor, having more information would be helpful in knowing how much I can expect to push myself before my health is at risk.

Thank you for your time, resources and patience,

Paige (Murwin) Denzler