I've been in and out of doctor's offices and hospitals enough over the last 45 years of my life that, at this point, I consider myself a Professional Patient. I think it is, in part, because of all my interactions (some good and some bad) that I am a strong proponent of patient advocacy. I think everyone, disabled or not, needs to take a proactive approach in managing their healthcare. And part of that approach should include hiring, and yes, sometimes firing, a medical practitioner who is tasked with your care.

Here is the main belief that guides my thinking around the relationship I have with my care providers: your doctor is not a "god" or "superhero,"— they are a person, just like you and me. Yes, they have specialized knowledge in a medical subject, but they are also human beings, influenced by all the same things that everyone else is. Individuals have their own unique personalities, temperament, biases, attitudes, etc., and that doesn't change just because someone is wearing a white coat or a pair of scrubs.

Additionally, I strongly believe that every patient knows his/her own body best. That is not to say that you will always know if you have a serious disease developing in your body of which you are not aware. At some point, you will feel sick, need an accurate diagnosis, and then require a treatment plan. But sometimes, an accurate diagnosis doesn't happen right away, and you are accidentally misdiagnosed. Or a care professional prescribes a treatment plan that you are not comfortable with. That is where being a strong advocate for yourself is very important. Trust me, you might not know enough to analyze every lab report, but you do know your own body.

I know the thought of firing your doctor can seem scary, especially if you are a people-pleasing type of person. Maybe you are scared you will offend him or her or make them mad at you. Additionally, you might see your doctor as an authority figure, and if you have struggled with authoritarian issues in the past, this could present an obstacle as well. These are all valid thoughts and feelings. But they shouldn't supersede the obligation you have to yourself to choose the best care provider for you and your specific health needs.

The doctor-patient relationship is one of the most important relationships you can have with another person.

If everything I have written to this point has not eased some of your anxieties about parting ways with a care provider, try this perspective: they really don't care if they are your doctor or not. Let me explain. It is a normal part of the human psyche to be self-centered about some things. We can tend to think that we are the only ones impacted by this, that, or the other. We like to think that we are our doctor's only patient or we are their most favorite, important, or needed patient. But that isn't true. Yes, some doctors really do care for their patients "as if" they were their only one. And that can be a really good feeling for a patient. But it is not objective truth. Just think about the waiting room you were sitting in before your last appointment. You can see by everyone else sitting in waiting room chairs that you are not your doctor's only patient. If you choose to leave their practice, nothing bad is going to happen. They aren't going to be mad at you. The sky isn't going to fall. The world is going to keep spinning. And no, you don't even owe them an explanation.

Here is another scenario that can happen that doesn't even involve you in making a choice. Say you have to move, or your doctor retires. You will be transitioned to a new care provider, then, right? If that is no big deal, then why should changing doctors just because the reason is you feel they aren't serving your health needs properly? Heck, I changed primary care physicians simply because I didn't want to drive the longer distance to her new office. I hate traffic! She didn't ask my permission to move offices, and I don't need to ask her permission to switch doctors.

The bottom line is, we have to start acting more like consumers of medical care. We have to see our care team in the same way we see our hairdresser or auto mechanic. Good, healthy relationships are built on trust, communication, and mutual respect. This should be no different for the medical profession. You wouldn't keep going back to a hairdresser who won't listen to how you like your haircut? So why would you keep going back to a doctor who won't take the time to answer your questions or perform a thorough exam?

Tips and Advice on Being A Good Patient Advocate

Okay, so now that I've emphasized why I think it is important to be an advocate for your own healthcare, now I want to give some advice and tips for how to do that and things that have worked for me in the past.

Be confident (within reason) that you can direct your own care plan. I very recently fired the cardiologist I had seen for almost four years. During my appointments, I would only get to see his PA, and recently when I wrote to him about a (non-emergent) issue I was having, his nurse told me to go to the ER. Ummm… no.

Don't be afraid to ask for a second opinion. If you get a diagnosis and want to have it confirmed by another doctor, that is understandable and should be acceptable to the original diagnosing doctor.

Know that you have complete access to your medical record. Here is a link to The Patient Bill of Rights. Every hospital system should have posted Standard of Care Policies and an ombudsman's office where you can file a grievance.

Not sure where to find a new doctor? I believe that birds of a feather flock together. If you have anyone in your care team that you do like and trust, even if they are in a different field, ask if they know of someone they could refer you to anyway. You never know who they might know. Additionally, Google the doctor you are thinking of seeing. Most have some kind of bio or rating on the internet. Find out how other patients describe that doctor.

When you are trying to establish care with a new doctor, don't be afraid to say that your first appointment is just to get to know each other from the very beginning. I am never so formal as to say "interview," but that really is how I think of it. If the doctor asks questions about why you are switching care providers, I would answer diplomatically and keep your answers brief. It is not any of their business. You want to answer enough not to seem evasive, but not so much that they make assumptions about you based on what you tell them. Also, keep in mind, if you are switching care providers within the same practice, the odds of the doctors talking about you to each other are incredibly high.

Don't be afraid to fight with insurance companies. I know this isn't really a care provider issue, but sometimes doctors are more concerned about insurance coverage than care. Let your doctor know that you want to know all of your care options and that you will appeal to your insurance company for approval if that is necessary.

Be aware of disability medical bias even though doctors take an oath to do no harm. As I wrote earlier, they are impacted by societal biases just like anyone else. They may not even be aware that the care they are providing is being affected by what they subconsciously think about disabled people or our quality of life. Be ready to listen for red-flag phrases like, "well, in your condition," or "considering everything else you have to deal with," or, "well, you have so many other problems." The bottom line is, your doctor needs to be providing you care as a whole patient, aware of your specific health considerations, JUST AS IF you were a non-disabled patient.

As frustrating as this is, understand that in the United States, the medical field is a business with a very real bottom line. It can also be very bureaucratic. I like to refer to it as the "medical-industrial complex." Healthcare decisions are often made based on what is best for the system and not best for the patient. Strong advocates recognize the system for what it is, so they can work to leverage that system in a way that best meets their needs.

Don’t be afraid to do your own research. Even though we aren’t doctors ourselves, we really do know ourselves pretty darn well. The internet can be a scary place sometimes when researching medical stuff. Because they want to avoid lawsuits they put a lot of information on the web that may not be specific to your condition. That isn’t to say that the internet can’t be a valuable resource though. Learning more information about something you are dealing with, either through a Google search, or a support group, can be very helpful in a) having you feel not alone and validating your experience and b) give you some data and information to take back to your care team that even they might not have known.

And lastly, somewhat related to my previous tip, don't take "no" from someone who doesn't have the power to tell you "yes." I heard that quote years ago, and I think it is so true. In the medical-industrial complex, there are layers of hierarchy and silos of care. Many times the right hand doesn't know what the left hand is doing. Use this to your advantage. If you advocate for a specific issue and don't like the answer you are told, don't be afraid to keep moving up the management chain or, even laterally, across departments. Odds are you will come upon someone who will help resolve your issue or join you in advocating for your case.

Please note that this post is based on my own life experience and my own opinions. It does not constitute medical advice. Always do what you feel is best for your own care.