Being Involved in Your Healthcare Without Being "That Patient."
All over the internet, we're told to "ask your doctor" and be "involved in your healthcare." Personally, I find this difficult. Basically, I don't like being a bother. And I have worked in healthcare.
Yes, this is a double-edged sword. I know how healthcare works, enabling me to suggest avenues that most people wouldn't know about. For example, I recently had a blood draw done, and when they called me with the results, they informed me that one of the tests hadn't been ordered. Instead of going back to the lab for another blood draw, I knew enough to say, "Well, that test would be done in a gold top, and they have two gold tops. They couldn't have used it all for the tests that they did, and it's only been three days. They will still have the samples, because they're a CAP-accredited lab, and CAP requires samples to be kept for look-back purposes for a period of time." So, where an average patient would have just gone back for an unnecessary blood draw, I instead said, "I'm going to call the lab and ask them to add the order to the existing sample." Furthermore, I'm getting a PhD in Pathobiology. I know more about the science behind disease than the average human. Depending on the disease, I know more about the underlying science of disease than the average medical doctor. I don't know more about the diagnosis and treatment, I'm not trying to undermine that they have expertise. But, I could tell you about the intricacies and pathogenesis of atherosclerosis and abdominal aortic aneurysm and thrombotic disease probably better than even many cardiologists.
However, because I've worked in healthcare, I feel for them. I don't want to be "that person." And honestly, people that were involved in their care were not annoying. People who wanted copies of their lab reports? Never bothered me. Not going to say that it didn't bother some people that I worked with, but never bothered me. But people who insist that they need whole exome sequencing because someone on their mommy-blog discussion board suggested that their child might have Ehlers-Danlos, even though all the standard diagnostic signs are absent? Those people are annoying. Note: I use Ehlers-Danlos as an example, because it's a popular catch-all disease to explain any and all symptoms amongst the "woke" on the internet. I am not saying that Ehlers-Danlos is not a real disease, or that people who have it are inherently whiny. Just that if anyone complains of any cryptic symptoms, especially cryptic pain symptoms, Ehlers-Danlos is one of the first things suggested. Notwithstanding that it has a prevalence of 1 in 5000 births.
I don't want to be that person who insists that I have a disease that has already been ruled out, and searches the internet for "ways to convince your doctor that you have blood clots diffusely throughout your body even though your D-dimer is normal."
So, I've always been pretty quiet. I go to my doctor like I'm supposed to, and I don't complain about anything. I sit down and shut up. This time I went to the doctor, I decided to do differently. I told them of nondescript symptoms that I had, things that aren't "life or death," but are just a bit obnoxious. I felt really self-conscious, especially since it was a new doctor. I swore, "I'm usually a really low-maintenance patient."
Low story short, I had upped my blood donation frequency and had completely depleted my iron stores. I worked night shift for too many years and then live in a windowless lab and my Vitamin D was down the tubes. And after taking care of these issues for only a week or so, I already feel much better. Much stronger. I have more energy, my brain is clearer. I can focus on my work for longer. My Irish dancing looks a million times better. The point is, I felt like I was whining. And I was actually completely justified in my question.
BUT...how do we find the balance? Here are a few thoughts.
1. Be willing to accept other explanations.
Don't get married to an explanation you read on the internet. Sure, if you read about something that matches your symptoms, feel free to ask if maybe that's the problem. But don't insist that that is what is wrong with you.
A big one for this is thyroid. You ask the internet, and anything wrong with your body is your thyroid. This is perpetuated by companies who pray off of "thyroid balance" programs, charging up to $50 a month to "balance your thyroid" or "give thyroid strength." Yes, thyroid issues are a very common problem in developed nations. However, the symptoms for thyroid dysfunction are very vague and esoteric. Feeling "foggy," "under the weather," "cold," "off," "just not right." And if your thyroid has been checked, then it's time to start looking other places. Don't be married to this idea that your thyroid is off balance. I see, constantly, these same companies claiming that if your thyroid has been checked, but you still feel these symptoms, that the reference ranges aren't valid for you. I'll be the first to say that reference ranges need to be taken with a grain of salt. Reference ranges move depending on the laboratory, the reagent lot, and just random error. Controls are valid if they are within 2 standard deviations of the true value. And beyond that, some people's bodies are normal at different places. Reference ranges are built off of average, not necessarily "correct." Millions of years of evolution have made our body chemistry fairly uniform, but there can be variation. BUT, a much better explanation than "the reference range doesn't apply to you," is "there is something other than thyroid creating these very nonspecific symptoms." Let's not decide that our conclusion is correct when the evidence goes against it until we have ruled out other, more logical, explanations.
2. Find a doctor who listens
You are always going to find yourself feeling like you can't have a say in your healthcare if you have a doctor who, quite frankly, gives you none. Doctors have egos. That's just a fact of the way the medical school system trains doctors (believe me, I get trained in the same building as they do, and it's readily apparent in the way they structure their training). But some are better at listening than others. So find one who is willing to listen to your concerns.
3. Be upfront about your level of healthcare knowledge
If you have very little science knowledge, but you want to know the reasons behind things, tell them. If you have a lot of science knowledge, tell them. I've always had much more productive relationships with my healthcare providers after we establish my areas of expertise. Many doctors actually come to yield to me on questions of laboratory testing once they know that, frankly, I have more expertise in medical laboratory than they do. Knowing that I'm a pathobiologist, they are much more intricate in their explanations of pathways and processes. But, if you are honestly a graphic designer, and you don't have any background in it, let them know that too. Because if they don't know the way to communicate with you effectively, they can't.
If a doctor explained Vitamin D adsorption and biochemically processing to a graphic designer the way they explain it to me, it would come off a pedantic. The person would probably come away thinking that their doctor was trying to make them feel stupid. And if they explained it to the me the way they would a graphic designer, it would come off as condescending. Don't get mad at a doctor for explaining it on a different level than is appropriate to you, if you never told them what level is appropriate to you.
4. Listen to your doctor.
You want your doctor to listen to you, listen to them. Notice that I didn't say, "Blindly obey your doctor." But no one, especially someone who has been trained to think that they are akin to God (which many doctors have been), likes to be completely disregarded and ignored. And if you listen to them, actually listen to them, it will go over much better when you say, "But what you're telling me isn't making sense with what I'm experiencing," or "I'm sorry, but I really feel like there has to be some explanation, because this is abnormal for me."
5. Be willing to accept that there is nothing wrong.
Sure, there's nothing wrong with asking for other options. But if you are 100% convinced that you have multiple health conditions and they have tested for that condition and found nothing, be willing to say, "I guess that's the way I am." After being tested for hypothyroidism until the cows come home, I had to just simply say, "I guess I'm a cold person." This is probably the number 1 piece to not being "that patient."
Here are just a few thoughts of how you can go to the doctor and communicate effectively without being "that patient." Because you want to communicate with them and find resolutions. But being "that patient" is a step backwards from that goal.
Yes, this is a double-edged sword. I know how healthcare works, enabling me to suggest avenues that most people wouldn't know about. For example, I recently had a blood draw done, and when they called me with the results, they informed me that one of the tests hadn't been ordered. Instead of going back to the lab for another blood draw, I knew enough to say, "Well, that test would be done in a gold top, and they have two gold tops. They couldn't have used it all for the tests that they did, and it's only been three days. They will still have the samples, because they're a CAP-accredited lab, and CAP requires samples to be kept for look-back purposes for a period of time." So, where an average patient would have just gone back for an unnecessary blood draw, I instead said, "I'm going to call the lab and ask them to add the order to the existing sample." Furthermore, I'm getting a PhD in Pathobiology. I know more about the science behind disease than the average human. Depending on the disease, I know more about the underlying science of disease than the average medical doctor. I don't know more about the diagnosis and treatment, I'm not trying to undermine that they have expertise. But, I could tell you about the intricacies and pathogenesis of atherosclerosis and abdominal aortic aneurysm and thrombotic disease probably better than even many cardiologists.
However, because I've worked in healthcare, I feel for them. I don't want to be "that person." And honestly, people that were involved in their care were not annoying. People who wanted copies of their lab reports? Never bothered me. Not going to say that it didn't bother some people that I worked with, but never bothered me. But people who insist that they need whole exome sequencing because someone on their mommy-blog discussion board suggested that their child might have Ehlers-Danlos, even though all the standard diagnostic signs are absent? Those people are annoying. Note: I use Ehlers-Danlos as an example, because it's a popular catch-all disease to explain any and all symptoms amongst the "woke" on the internet. I am not saying that Ehlers-Danlos is not a real disease, or that people who have it are inherently whiny. Just that if anyone complains of any cryptic symptoms, especially cryptic pain symptoms, Ehlers-Danlos is one of the first things suggested. Notwithstanding that it has a prevalence of 1 in 5000 births.
I don't want to be that person who insists that I have a disease that has already been ruled out, and searches the internet for "ways to convince your doctor that you have blood clots diffusely throughout your body even though your D-dimer is normal."
So, I've always been pretty quiet. I go to my doctor like I'm supposed to, and I don't complain about anything. I sit down and shut up. This time I went to the doctor, I decided to do differently. I told them of nondescript symptoms that I had, things that aren't "life or death," but are just a bit obnoxious. I felt really self-conscious, especially since it was a new doctor. I swore, "I'm usually a really low-maintenance patient."
Low story short, I had upped my blood donation frequency and had completely depleted my iron stores. I worked night shift for too many years and then live in a windowless lab and my Vitamin D was down the tubes. And after taking care of these issues for only a week or so, I already feel much better. Much stronger. I have more energy, my brain is clearer. I can focus on my work for longer. My Irish dancing looks a million times better. The point is, I felt like I was whining. And I was actually completely justified in my question.
BUT...how do we find the balance? Here are a few thoughts.
1. Be willing to accept other explanations.
Don't get married to an explanation you read on the internet. Sure, if you read about something that matches your symptoms, feel free to ask if maybe that's the problem. But don't insist that that is what is wrong with you.
A big one for this is thyroid. You ask the internet, and anything wrong with your body is your thyroid. This is perpetuated by companies who pray off of "thyroid balance" programs, charging up to $50 a month to "balance your thyroid" or "give thyroid strength." Yes, thyroid issues are a very common problem in developed nations. However, the symptoms for thyroid dysfunction are very vague and esoteric. Feeling "foggy," "under the weather," "cold," "off," "just not right." And if your thyroid has been checked, then it's time to start looking other places. Don't be married to this idea that your thyroid is off balance. I see, constantly, these same companies claiming that if your thyroid has been checked, but you still feel these symptoms, that the reference ranges aren't valid for you. I'll be the first to say that reference ranges need to be taken with a grain of salt. Reference ranges move depending on the laboratory, the reagent lot, and just random error. Controls are valid if they are within 2 standard deviations of the true value. And beyond that, some people's bodies are normal at different places. Reference ranges are built off of average, not necessarily "correct." Millions of years of evolution have made our body chemistry fairly uniform, but there can be variation. BUT, a much better explanation than "the reference range doesn't apply to you," is "there is something other than thyroid creating these very nonspecific symptoms." Let's not decide that our conclusion is correct when the evidence goes against it until we have ruled out other, more logical, explanations.
2. Find a doctor who listens
You are always going to find yourself feeling like you can't have a say in your healthcare if you have a doctor who, quite frankly, gives you none. Doctors have egos. That's just a fact of the way the medical school system trains doctors (believe me, I get trained in the same building as they do, and it's readily apparent in the way they structure their training). But some are better at listening than others. So find one who is willing to listen to your concerns.
3. Be upfront about your level of healthcare knowledge
If you have very little science knowledge, but you want to know the reasons behind things, tell them. If you have a lot of science knowledge, tell them. I've always had much more productive relationships with my healthcare providers after we establish my areas of expertise. Many doctors actually come to yield to me on questions of laboratory testing once they know that, frankly, I have more expertise in medical laboratory than they do. Knowing that I'm a pathobiologist, they are much more intricate in their explanations of pathways and processes. But, if you are honestly a graphic designer, and you don't have any background in it, let them know that too. Because if they don't know the way to communicate with you effectively, they can't.
If a doctor explained Vitamin D adsorption and biochemically processing to a graphic designer the way they explain it to me, it would come off a pedantic. The person would probably come away thinking that their doctor was trying to make them feel stupid. And if they explained it to the me the way they would a graphic designer, it would come off as condescending. Don't get mad at a doctor for explaining it on a different level than is appropriate to you, if you never told them what level is appropriate to you.
4. Listen to your doctor.
You want your doctor to listen to you, listen to them. Notice that I didn't say, "Blindly obey your doctor." But no one, especially someone who has been trained to think that they are akin to God (which many doctors have been), likes to be completely disregarded and ignored. And if you listen to them, actually listen to them, it will go over much better when you say, "But what you're telling me isn't making sense with what I'm experiencing," or "I'm sorry, but I really feel like there has to be some explanation, because this is abnormal for me."
5. Be willing to accept that there is nothing wrong.
Sure, there's nothing wrong with asking for other options. But if you are 100% convinced that you have multiple health conditions and they have tested for that condition and found nothing, be willing to say, "I guess that's the way I am." After being tested for hypothyroidism until the cows come home, I had to just simply say, "I guess I'm a cold person." This is probably the number 1 piece to not being "that patient."
Here are just a few thoughts of how you can go to the doctor and communicate effectively without being "that patient." Because you want to communicate with them and find resolutions. But being "that patient" is a step backwards from that goal.
Comments