"It was his hat Mr. Krabs; he was number 1!"

\Post04\ 07.29.2024

Ope – First let me put a lil’ disclaimer: this is not a motivational post (not for everyone at least).

You know that feeling when the vibe is just not right? Like everything feels kind of off, but in a weird way? That is kind of how I’m feeling right now. I’m rummaging through the confines of my mind trying to figure out why I’m receiving rejection after rejection from doctors held in such high esteem. These are top tier doctors from top tier research hospitals. Allegedly.

I find it so very odd that physicians with PhDs in research or those who currently run research studies are not jumping at the chance to solve Ms. Mystery over here. There are so many underdiagnosed diseases (and over diagnosed) that do not have known cures. So. Many. There are people researching the cure to a cancer that affects less than 20 people per year; people researching diseases that only exist in remote populations in one corner of the world. So I know these clinicians exist – the clinicians willing to go the extra mile for their patients, who do not care about riches or fame, those that just want to put good into the world.

However, let me appeal to the money-hungry clinicians for a second: why would you not want the chance to say that you were the person who solved the “unsolvable”? The “too mysterious” condition? To actually find the etiology of the disease of “unknown etiology”? To be the one who publishes that paper, who does those major interviews, the one on the news enjoying the perks that come with making a novel discovery – wouldn’t that be nice? What a dream it would be to find that one person willing to go all Buzz Lightyear for me just to make sure I live past the age of 30… Well – I did find that person. People, really.

I found the one group of clinicians (2 to 4) willing to not turn me away or claim that I am merely a lost cause. A waste of hospital funds. A waste of grant money. A waste of time – time that could be spent helping patients with “real diseases”. The doctor I met said he would not stop until he was able to provide me with at least some answers if not a cure or treatment. But something. Something tangible to say, “look! I’m not making this up! I’m in excruciating pain every day of my existence and it's hard to live because of this! See! 120lbs didn’t just disappear for no reason! My intestines don’t work due to this!” But there I go again asking for a little too much. I do have to travel from coast to coast just to see these physicians, but beggars can’t be choosers. In my case, I can never be a chooser of my own clinicians anyway (that’s a story for another time I think).

But is asking for answers too much? Am I going too far?  

Well, the easiest way to answer this question if you find yourself in a similar predicament is to ask yourself this instead – “Has anyone with a rare disease ever been told they have a rare disease and given its name?” – and if the answer is “fuck yes” (that is the only correct answer actually, sorry), you’re not asking for too damn much. Research for the benefit of a patient is the bare minimum in my opinion. Reading a book to search for answers should come as second nature for a clinician! Maybe that’s a little too motivational…

Before anyone says ANYTHING, I work in the healthcare setting so I see this firsthand – yes, we do have to take into consideration how healthcare in the U.S. is a complete joke, how clinicians are extremely overwhelmed/understaffed/underfunded/underappreciated (amongst other things) and there are some people who really should not be practicing medicine of any kind… The thing is: patients should not have to carry more weight than their own. That right there is actually asking to much. Having a patient wait, like a pot of water on the stove you keep checking on to see if it’s boiling, in a waiting room while you (the clinician, not you beautiful readers of course) are over 90 minutes late to an appointment scheduled months in advance is wild work! Let a patient even think about being 15 minutes late and the whole appointment needs to be rescheduled. This just happened to me last week. Annnnnnd guess what the result was! I bet you didn’t see this coming: the physician was only able to spend 15 brief minutes with me to do a complete body check. This highly sought after physician that schedules out 5 months at a time was only able to spend a little time with me and answer a few of my questions. Then it was on to the next patient who had been waiting close to 2 hours for their appointment to start… That’s not good healthcare. That’s not quality healthcare. That’s rushed, imprecise medicine. That’s not cool.

Ugh – okay, okaaayyyy. I think I have to sprinkle some positivity in here.

Let’s circle back to the “why do physicians keep turning me away?” question.
For me I think it is:

•  The language used in my medical record that got me 
• For example: a misdiagnosis that the original physician refuses to change, even after being proved wrong by several tests. 
• I’m a “difficult patient” because I come with my questions prepared or mention an article published in JAMA (The Journal of the American Medical Association) or something. 
• I “refused treatment” because I could not afford it (group therapy 8 hours per day, 5 days per week) that would force me to QUIT MY JOB, costs $60k USD for the program alone and nearly $10k USD in room and board. And oh yeah – NOT COVERED BY INSURANCE. It took 3 months for Miracle Whip Clinic  (it ain’t safe out here, y’all know that) to amend my medical record to make sure it stated that I did not refuse treatment, but it was that I could not afford it and no payment plans or alternative payment methods were available when asked. But at that point the damage was done.

We will talk about the misdiagnosis thing another time, as that is a long one.

How about I attempt to end this with more positivity: If something is not right in your medical record, or if something just isn’t adding up in that clinic note or your After Visit Summary, ask questions. Speak to your patient advocate. Ask for an amendment to be made or an addendum to be added to your record to correct false information. It’s okay to let a clinician know that certain language can be damaging, or even detrimental to your healthcare and future health. These are the things that are missed by patients because no one takes the time to inform people about their options. Their rights as a patient. Patients are really made to feel like a burden the second a concern is raised and that needs to stop. If only facilities took the time to educate patients about their rights instead of having them sign a 5 page, single-spaced, 8pt font document that reads “YOUR RIGHTS AS A PATIENT” 5 minutes before their appointment starts… I digress.

Remember that you have options. You have the right to raise concerns, even when the clinician rolls their eyes or lets out an exasperated sigh. Your future healthcare team will be using these records to make informed (seemingly so at least) decisions about your care and they will follow you for the rest of your life so they need to be accurate and unbiased. YOU MUST LOOK OUT FOR YOU. Be your #1 advocate. Believe me, there will come a time when that works in your favor exponentially.

As always, you deserve the entire world and then some. ✨❤️