On a fairly regular basis, I come across something with regards to my healthcare that I don’t know or understand. I may be surprised, even vexed, or just curious and eager to learn something new. I rarely feel I’m lacking as a result.
No, that isn’t what makes me feel stunned, naive, or even betrayed.
Hands down, what does that for me is when I defend something I believe should be true and it turns out it wasn’t true at all.
Case in point: I trust that the things being tracked, the questions asked, the tests ordered, the entire visit to my healthcare professional is to provide the data we – my healthcare team and I – will use to determine next steps in the course of my chronic disease.
These are big decisions we are making; ones that affect the quality and quantity of my life. My life … and those of my loved ones …
As a patient, I once believed there is a pre-set, pre-agreed upon, best practices, set of rules and guidelines that physicians will follow because it will lead to the best outcomes of those under their care. There should be … right?
It turns out I was a little hasty in my zeal.
Let me give you a pertinent example. As someone with rheumatoid arthritis, one measure of my disease is inflammation. Inflammation means my disease is active. When it is active there is damage being done to joints and organs. There’s also a lot of pain associated with inflammation. So, basically, inflammation is a bad thing. We want to keep it to a minimum.
We want to monitor it carefully.
So far I think we are all in agreement … but, that’s where it stops, because what happens next is all up to who you have as your rheumatologist. I would understand if the reason for very different treatment (and the accompanying explanation) were the complications and conditions associated with the individual … we are all different … but that only goes so far.
I’m not referring to the medication we take to manage our disease (although methotrexate appears to be the standard go-to prior to biologics). I’m not even referring to how often we see our specialist (can vary from 3-12 months) as I suspect it’s too many patients per specialist driving the frequency rather than anything else.
No, what has me perturbed is something entirely different.
In my history of visits to my rheumatologist I have reported pain, stiffness, weakness, and fatigue greater than usual. The past month’s blood work often supports an increase in inflammation and disease activity over that time period. A visual and tactile inspection of the affected joints confirms these reports. As a result the current medications may increase in dosage, additional medications may be added, pain medications may be increased in dosage or new ones added.
Again, so far, so good … except it isn’t.
It gets worse.
Here are some things I have learnt in speaking with other RA patients:
Some patients go for lab work far less often than I’ve been told is required.
Some patients are told the exact opposite of what I’ve been told with respect to “do’s and don’ts” of medications, exercise, and alcohol.
Some patients are never given a visual and tactile examination.
I consider myself fortunate that my rheumatologist uses a variety of information sources (including me) and we have formed a two-way communication that works for us. The same cannot be said for all patients, unfortunately, as a physician practices what and how they’ve been taught and that all depends on where they went to school.
All of which brings me back to the issue of standards …
First, not everyone is going to get the same advice, plain and simple. Whether it’s because of where a physician went to school or a combination of all their experience since then, all we can expect is the very best they can give us based on their assessment.
Second, not everyone is going get a specialist they can work with. Whether it’s because you have talked to other patients and want to try something else or you are uncomfortable with the care you are receiving, it happens.
Third, last, and most important of all, it is you, and only you, that is ultimately responsible for the care you receive. It matters not at all if you’ve read it, heard it, or even imagined it, if and when you want to try something or someone else you owe it to yourself and those around you to act.
The thing is there may indeed be an element of “craft” to this thing they call medicine and so maybe having different ways of doing things can actually be better for patients, making it all the more important you take ownership of the care you are receiving.
You are entitled to ask questions and receive answers you understand.
You are entitled to a second opinion or even a third.
You are entitled to a circle of care that you trust.
What does it take for you to get a second opinion?
After all, it is your life.