I’m not going to lie, the reason that I first started this article was so I didn’t scream at the next person that said “OOOOOOOO, I’m going to tell your surgeon you’re doing that!” when they saw me walking. To their credit, I have a bit of a unique complication that has caused me significant loss of normal mobility for quite some time. I’ve generally been using a knee scooter in hopes it would help it to heal as per doctor’s orders. It’s not like I share my medical file with everyone I talk to, so I’m sure to some it was surprising to see me on my feet. That’s as much credit as I’m willing to extend on a personal level.
I am not concerned that they’re going to get in contact with anyone on my team and spill all my secrets. I am concerned that they’re going to take up time of anyone on my team with information my doctors are already aware of or exaggerate their story because they believe they need to help by making sure a member of my medical team take my perceived infractions seriously. It’s this kind of thing that leaves me feeling betrayed and infantalized rather than assisted out of caring. However, after discussing with a few people that work in the field of medicine, I decided I also needed to take a breath and acknowledge that having someone come and talk to them can, in fact be helpful. So…now that you’re aware of how this idea was born, onto the main event.
When You’re on the Outside Looking In
In general, we are all grateful for those people that are looking out for us. Though I will grump and growl (and I’ll rarely admit this to someone’s face) I am typically grateful when a friend makes me sit down when I need to. I’m so used to pushing past everything, I may have a tendency to forget that I’ve got limits I should be adhering to. It makes it even more complicated when I can go from functional to including words like “shmruffle” in a sentence and expecting that the person I’m talking to will comprehend what I meant.
There’s currently one member of my team I’m in regular contact with, a few that I’m on semi-regular contact, and a few that just kind of pushed me off till I’ve got other things sorted. That’s a lot of people taking blood and samples, running diagnostics, and giving orders. When I was given the green light to start walking, there were several people that jumped to threaten calling some of my medical team. To them, I’ve been talking about the frustration of not walking, and not being permitted to walk, and there I was walking around outside. In their mind, the frustration had gotten the best of me and I was making a desperate escape from the confines of my knee scooter.
There is usually such a long mental checklist to most things I do, and I don’t often share each and every conversation with those around me. I’m sure it seems reckless or straight up dangerous to some people when I’m all of a sudden walking or trying out a new treatment. Some tasks I’ve been given, induce pain and it doesn’t help that I’ve got a lot of morbid humor to me when I explain what I’m doing. Applying silver nitrate becomes “using a death stick to murder the inside of my ankle”. Not exactly a mental image that screams safety and confidence in my approach to treatment…I know. It creates an atmosphere of accentuated concern among some of my close folks. It’s hard to picture that I’m sitting here, wincing and squeaking in pain willingly, then be happy and chipper when I talk about how much I hate it, and then acknowledge I’m often not healing as a normal person. To most, it really seems like there is a communication or adherence to orders issue that is probably making my circumstance worse.
It’s for this reason that I try not to get too annoyed with those that have a tendency to “mother hen” around me. Sometimes, I legit need to be yelled at to sit my ass down. Other times, they’re only seeing the small bits and it feels like conflicting information in their mind. Aside from being psychic, it is really difficult to know which is which unless you’re part of my medical team. While I know that I’m following orders and telling my team what I’m doing and the reactions that come about…that’s just me and how I personally approach life.
Doctors Only Have the Information Provided
There’s an issue that comes up when it comes to patient care though. As much as we wish they were magical creatures that could always divine the correct diagnosis and treatment, even the best ones are only as good as the information they’ve got to work with. If I had been walking around in the yard barefoot while I was supposed to be having it elevated and yet not giving that information to my medical team…that’s a problem in helping my doctors diagnose the core of the issue. Same with if I lied about treatments or reactions to said treatments. I would have been hurting my chances to heal, and that has less to do with my doctors and more to do with me providing false information.
Sometimes, as I mentioned above with migraines, my other half has provided important information that I have not mentioned during a visit. A medication I forgot to mention. A symptom that slipped away from my mind. It’s one of the reasons that I am relieved that he comes to most visits with me. If I forget something, I’ve got backup! For my appointments, it’s not so much that I’m needing someone to make sure I tell the truth as much as it is making sure I remember all of the relevant information to share without carrying a scroll and dramatically rolling it across the floor to read off of.
There are those that should have someone come with them to appointments because of their tendency to contaminate the truth. This may be because of declining mental ability due to dementia. It could be that they’ve got another mental hurdle creating a compulsion to decorate the facts. Whatever the reason, their health and care will be compromised if their medical team does not have access to the reality of their situation. Those family and close friends become invaluable.
Helping a Patient isn’t a Competition that Wins You a Gold Star
Because of my limited mobility, there’s been times when a friend has helped me get to appointments. There have been at least one that had it in their mind this was a perfect opportunity to throw me under the metaphorical bus. They wanted to tell the doctor all the things they thought I was doing wrong. It was like screaming “I’m being the bestest helper friend and telling the doctor because I care the mosterest. Look at me being the bestest helper!”
Most people don’t intentionally go out of their way to provide false information. When it happens to a significant degree they usually call it Munchausen by Proxy and is considered abuse. But, as annoying as it is, most really don’t have malicious intent. It’s more often just…slightly misplaced and misdirected.
Giving false or exaggerating information to a doctor, can be as harmful as neglecting to share important facts. If I’ve been walking and keeping my team informed about the distance and updating them on symptoms, this is important. If someone shares that the walking has included going up and down flights of stairs, this could be an important tidbit, especially if the core issue had been getting worse. However, if that someone was exaggerating a single step down that was occasionally taken to make it sound like I was taking flights of stairs…this is giving the doctor an inaccurate correlation.
Often, they just are too focused on the need to be seen as a kind of White Knight to the patient in question. Their focus is to be seen as important and significant. Too many times, an impressive amount of self deception is involved to where they have convinced themselves that without their involvement, the patient in question will fail to receive the proper care.
This is complicated by times when their input may have actually been invaluable to a situation. Any bit of self deception that was starting to chip away, gets plastered back up and they feel even stronger that they need to share things to “save you”.
What Can You Do?
From a patient perspective, take a step back. Take a few deep breaths. Then take a fresh look at what’s going on. Is this person providing any information that has been helpful? Are you angry and upset because they’ve embarrassed you with information you were uncomfortable sharing, or because they’ve complicated your case in unnecessary ways? There are some people that a simple conversation will suffice. Others, you may try to talk to your doctor and see if they’re willing to ask them to leave the room. Call the office and explain the situation so it can at least be noted so the doctor can be aware.
If you are the friend or family member reading this, I do hope you’re not defensive. Take a hard look at your approach. Are you excited about sharing information about the patient? Do you find that you’re making a long list of notes? Do you often interrupt the appointment to interject information before the patient can fully answer? Do you wish you had a direct number for the doctor so you can call them when the patient does something wrong? Have you called the office in between appointments just to leave a message for the doctor about something the patient has done wrong? If the doctor gives the patient more direct attention than you during the appointment, do you feel like they ignored your input? Has the patient or the doctor asked you to let the patient speak for themselves when you try to give information?
If you answered yes to any of those, you may need to take a step back and really evaluate what you’re trying to accomplish when talking to their doctor. Yes to more than one, and you should REALLY take a step back. Your desire to be helpful should not be overpowering actually being helpful. The first priority is and should always be to make sure that the patient is getting the care they need. It should not be an excuse to get a doctor to agree with your personal views on the life choices of the patient. It should never be a gossip session to share dirt on the patient so they’re embarrassed and more likely to comply with what you personally think is best.
Information is power. Almost all of us have had heard Uncle Ben tell Peter Parker “With great power, comes great responsibility” at some point. This is one of the many examples of how that phrase can be applied to real life situations. Sharing information with the doctor of someone else is a responsibility that comes with very real consequences. Take it seriously. Use the power of that information with awareness of those consequences rather than letting the feeling of wanting a gold star for your noble effort creep in.
