The Textbook Answers

One of the greatest challenges in our current approach to medical understanding is that many health professionals expect each illness, disease, infection, or any medical issue, to fit into this pristine little package of universal symptoms.
Disease, especially chronic disease, rarely fits the exact textbook description.

If we still have not found a root cause of a chronic illness, and still have not found a mostly effective cure for a chronic illness, then we obviously do not fully understand that illness.
So why would we expect the illness to present with the exact particular symptoms and descriptions found in a textbook for each and every case???

It has come to light in recent years that heart attacks in women often present with subtle and nearly imperceptible symptoms compared to what men experience. It is the same way for strokes, hormone imbalances, pelvic pain, even the common cold. Going even deeper than the surface topic of chromosomal sex differences is that every single person experiences all medical issues slightly differently.

For some added anecdotal examples:

• Whenever I have had severe pancreatitis, pain was never a symptom until it was ready to burst. It was always unbearable nausea and feeling 'full', followed by vomiting bile. The first few severe episodes - ones I was hospitalized for - I had not had any pain. At all.

• One of the first 'criteria' for having Age Related Macular Degeneration is to be over 65 years old. My eyes (upon scans and testing for over 10 years) show that they are over 70 years old, when I am quite obviously not. So unless I have a new disease that has not been identified or labeled, AMD is what I have. It is what I have been diagnosed with.

• My HAE swelling is subtle and widespread. I am basically perpetually swollen, and my face is not usually severely involved. But the treatment works. It works perfectly. And that *could not* happen if I did not have this particular disease.

• Even with severe infections (like the kidney infection I had a couple of years ago from a severe UTI), I do not present with a fever. I only ever remember having one fever, and I have had numerous cases of strep throat, bronchitis, UTI's, severe ear infections where I temporarily lost my hearing, etc. No fever.

• My vein access in my forearms are so tough and rigid that whenever any nurse tries to start an IV there, they always presume that I have Diabetes. I do not have Diabetes.

• I was diagnosed - by imaging, biopsies, physically seeing the liver while I was opened up in surgery, and bloodwork - with Primary Sclerosing Cholangitis. And yet, after my second abdominal surgery, there was no sign of this disease. In the textbooks, it is impossible to heal that liver disease. *Impossible*. I mean, I could spout off that living on a diet of chicken and white rice 'cured' me, as that was my diet at the time. Or that having a temporary ileostomy bag 'was a toxic cleanse for my digestive system that cured my PSC'. I could try and claim those things, but they are ludicrous and I could not morally or ethically make those claims.

• My very first GI specialist called me an "ENIGMA" the first time we met. I did not clinically fit the exact description of Ulcerative Colitis, and yet my scopes and biopsies and tests, and further testing all showed that that is exactly what I was suffering from. Even when they removed my large intestine, the organ itself did not match the entirety of the textbook criteria and had a quality about it that differed from some other patients. But again, unless I have some new disease that mimics all of these illnesses that has yet to be identified, I simply do not always fit the textbook.

Now anecdotal examples are just that: examples. None of these are presented as irrefutable proof, but examples can still be useful.

I reiterate - if we still don't know everything about a disease (and we can't, because diseases are always changing; always evolving), then why on earth do we expect every case to fit the exact description of what is written in a textbook? That just does not make sense.
Those descriptions and definitions are absolutely essential to help treat illness. They are our best tools to understand medicine. They are not instruction manuals for IKEA furniture. There is not a set amount of pieces and a set amount of steps so that every person with the same chest of drawers ends up with the exact same model and result every single time.

Just some #latenightthoughts