Receiving a medical diagnosis is a complicated subject. At first, it might seem sacrilegious for a healthcare provider to even suggest that sometimes it isn't worth it to get a formal diagnosis. In fact, the sheer suggestion of it, and the potential liability I would face if someone didn't go get diagnosed with something important makes me hesitate in writing this article at all. However, in the interest of informed consent on the part of patients, and good clinical decision making for providers, I'll continue on.
But first, in the interest of healthy disclaimers: The information in this article is not intended to replace individual medical advice. It is intended for educational purposes only in order to assist patients and providers in considering their options and motives for pursuing healthcare services/diagnosis. You are encouraged to seek individual medical advice regarding your personal health from licensed providers.
Everyone does some degree of self diagnosing on a regular basis. We all decide whether or not the aches and pains of life require patience, self care, or medical attention. As we attempt to make wise decisions about how and when to utilize the healthcare system, it's important for both patients and providers to ask ourselves, "Why are we seeking a diagnosis?" Deciding whether or not to pursue getting a diagnosis for a condition should be based on your individual needs/circumstances, and the type of condition.
Unfortunately, those are often not the only factors at play. Getting a diagnosis involves both the patient, and the healthcare providers they work with. Both parties have their own motives to evaluate, and should be aware of each other's points of view. Let's step into both perspectives of the patient and the provider, then take a look at the questions to ask yourself in deciding what is best for you.
The Patient:
To be clear, patients are by no means a "one size fits all" group of people. There are a variety of attitudes people have towards seeking and receiving a diagnosis.
On one hand, receiving a diagnosis offers some degree of validation of your symptoms. It legitimizes your experience to others and comes with documentation that you can use to advocate for yourself in your school, workplace, or even with your family. On the other hand, it is time consuming, and often involves testing that is expensive, anxiety producing, and/or uncomfortable.
Fear is a major motivator for human behavior. The question becomes, what is the object of our fear(s)? For some, the fear of the medical bill is so great, they would rather risk dying than go to the emergency room. For others, perhaps the fear of embarrassment from having to tell someone about their symptoms prevents them from seeking care. Maybe the fear of the pain that may come with testing, or a fear of needles influences a person's decisions to see a doctor. For some, a fear of death is ultimately the strongest motivator.
The fear of the unknown often drives patients to seek diagnosis. When you can't explain your symptom(s), some of us begin to worry. All it takes is a few keystrokes and the infamous "Doctor Google" can quickly have your head spinning with a hundred possibilities. While some of the options seem harmless, others could be lethal if left untreated. The internet can be a wonderful tool in accessing information, but it's algorithms aren't always able to decipher which information is most relevant for your personal situation. While Artificial Intelligence may admittedly have increasing roles in healthcare in the future, for now it isn't ready to replace your doctor. It doesn't know which follow up questions to ask you to gain more information that might be relevant. In short, the internet isn't a replacement for your doctor's medical degree and the years of experience they have in patient care.
While having a name (diagnosis) can be relieving for some, it can feel like a label for others that they will now have to carry with them through life. The burden of knowing, and then the obligation to deal with that diagnosis accordingly can feel overwhelming. For some people "ignorance is bliss", at least in the short term anyways.
The Provider:
There are several factors in clinical decision making to decide whether or not to pursue diagnosing a patient. Some of them are in the patient's best interests. Others have more to do with protecting the provider's interests.
While one might want to believe that the provider always has the patient's best interests at heart, providers are people too. Just like patients, providers live in a real world with financial pressures, societal expectations, and bosses that have expectations of them as well.
In truth, many health care providers live their lives in suppressed fear of being sued for not being able to find the correct diagnosis for a patient, so the idea of even suggesting not seeking a diagnosis sounds ominous. By nature, most providers will be inclined to order every kind of test for a patient to search for a diagnosis, rather than to risk missing something important.
The AMA's analysis shows that over 30% of doctors have already faced at least one lawsuit (1). While it varies by specialty, studies suggest about half of doctors will be sued at some point during their careers (2). It is an important part of the legal system for patients to be able to sue. However, while legitimate cases of malpractice do occur where compensation for patients is appropriate, there are also some lawsuits that are made for a variety of reasons that are misguided. While courts exist to adjudicate these proceedings, it can be an expensive and time consuming process for all parties involved.
This is no secret to providers. Lawsuits can be an incredibly stressful experience they would rather avoid. Healthcare workers, in general, have struggled with higher than normal rates of burn out, and depression since the pandemic (3). Sadly, most providers who are sued will experience some degree of anxiety and depression. Lawsuits are also associated with increases in suicidality and divorce rates amongst healthcare providers.
Aside from the fear of the public humiliation, stress of a legal trial and fear of losing their license/livelihood, there is the financial pressure.
There is financial pressures on healthcare providers both to not lose money by being sued, but also to make money and meet the productivity standards of their employers. Between the two, it's enough to make most providers willing to hand out orders for medical testing like candy on Halloween. Ordering more testing, and prescribing more treatments can help providers meet those productivity standards in some cases.
The fact that the provider often doesn't know what the testing will cost you, (because it varies by your insurance) makes them even more removed from the fact that healthcare costs something for the patient. While most providers try to consider this and genuinely care about their patients, they have a limited amount of information regarding the financial implications for the decisions they make.
It's no secret to patients that the cost of healthcare is a significant financial burden on American families, especially those who have rare and/or chronic illnesses. One 2007 study found that 62% of bankruptcy filings in the United States were due to medical bills (4). Pursuing testing to get a diagnosis ultimately costs patients something. Even if you don't pay for your healthcare directly, there is always a cost, even if that cost is your time.
It also bears mentioning, that even if you don't directly pay for your healthcare, someone does. Whether it is taxpayers, or a hospital that has to cover the cost of the treatment provided (if for example a person declares bankruptcy), someone ultimately pays for the cost.
Far beyond money, your time is valuable, and time spent getting testing, is time that isn't spent with your family, on your hobbies, working, etc.
Questions to Ask:
So, as you decide whether or not seeking a diagnosis is worth your time, money, and energy, here are some things to consider.
Is not getting diagnosed dangerous?
Does getting diagnosed give me access to any new treatment options?
Am I willing to undergo those treatment options?
Does getting diagnosed mean I will have a negative stigma?
Does getting diagnosed help me to get any help/services at work/school?
Does getting diagnosed help me to get disability? And if it does, do I really want it?
The most important question to ask is about safety. This can vary widely by what you are being diagnosed with. For example, if I am 65 years old, having chest pain, shortness of breath, and pain in my left arm, and I think I may be having a heart attack, not getting diagnosed is dangerous. In a different scenario, if I developed a stuffy nose and itchy eyes for a week in the spring when all the flowers bloomed, and it went away afterwards, if I decided not to pursue formal allergy testing to determine which type of pollen I am allergic to, it is less likely that I would suffer any immediate harm. This question applies more specifically if you already have an idea of what diagnosis you are seeking. If you have symptoms that you can't explain and aren't sure what could be causing them, it's usually best to be safe and leave it to the experts. While the internet can be a helpful tool, it is not a replacement for a medical degree.
Most people are so trained by the healthcare system to seek out a diagnosis, that we don't think much about what happens after that. The truth we eventually will come to find, however, is that there are several diagnoses that medicine doesn't have many treatment options for. The treatment options available are also sometimes things that don't require a prescription or any skilled medical service. If you have a diagnosis in mind, it's worth a quick internet search to see how that diagnosis is treated. When I was a child and my older brother got the chicken pox, (after which I soon developed a similar rash) at the time, the treatment was simply to stay home, take a bath and try not to scratch. My mother decided not to take me to the doctor to be formally diagnosed with something that she already knew was probably chicken pox and didn't change my treatment plan. She felt it would have been a waste of time and money.
To consider another perspective, the potential treatment options that require intervention by a healthcare provider might be something you are not willing to do. If a person is experiencing symptoms of depression, but they do not want to take antidepressants due to fear of the stigma associated with taking mental health medications, they may choose not to go to the doctor. If their preferred approach to management is to first try to improve their diet, exercise and sleep habits to see if the symptoms improve, a doctor's visit may not be needed to accomplish those things.
While the stigma around mental health disorders is unfortunate, and seeking treatment should be seen as a sign of wisdom and strength rather than weakness, not everyone agrees. There are many disorders for which the stigma gives people pause in their decision to pursue getting a diagnosis.
Sometimes the motivation for getting diagnosed is the accommodations you may gain access to because of the diagnosis. If you are formally diagnosed with migraines, even if you aren't willing or able to take the medications a neurologist might prescribe, it may allow you to apply for FMLA to have excused absences at your job. It may allow you the ability to go lie down in the nurses' office at school until your parent can come pick you up and not be penalized for needing to present your science project to the class another day. There are all kinds of accommodations that you can seek for a variety of disabilities. Medical documentation can give you some legal ground to stand on when making your requests.
Disability is a tricky subject. There are a variety of valid reasons to seek disability. While many people who seek disability do so honestly and for good reason, there are some who do not, which can make navigating the system challenging. It can take multiple applications, over a number of years for a disability case to be approved, and it may require hiring a lawyer.
By the time you pay for all the medical bills to get proof of your disability, it may or may not be worth it. One doctor's opinion is sometimes not enough to convince the government of your disability. It can be a long road to get a diagnosis, which doesn't even guarantee being awarded disability. At the end of the process, some people wonder if it may have made more sense to spend that money on a career change.
The financial compensation from being awarded disability is often less than what you made at your job before. People have to consider all of their options carefully based on the extent of their limitations/disability, their alternative career paths, and the amount of money disability would give them. Then they can crunch the numbers to decide what is the right path for them.
In summary, the decision to seek a diagnosis is a personal one with many factors to consider. This article should give you a starting point of factors to consider and give you more peace that you are making an educated decision as you make decisions about when to seek a diagnosis.
(1) Medical Claim Liability Frequency Among U.S. Physicians by José R. Guardado
(2) When will the lawsuit come? For doctors, it's a matter of time by Timothy M. Smith
(3) Healthcare Worker Mental Health the CDC
(4) Medical Bankruptcy in the United States, 2007: Results of a National Study by David U. Himmelstein MD, et. al.
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