Each year about 700 pregnancies in the U.S. end up with the preventable mortality of either the mother and/or the baby. This problem continues to rise every year according to the National Healthcare Quality and Disparities report in 2022. These issues were especially highlighted when famed tennis player, Serena Williams, came out to discuss the major hurdles she had to overcome just to get the proper care surrounding her pregnancy and delivery.
Not only do preventable deaths and injuries occur amongst women, but also amongst various populations. For example, in the book: Medical Apartheid: The Dark History of Medical Experimentation on Black Americans From Colonial Times To Present it explains the unequal treatments of African Americans with supporting research from doctors. Many times, as in Serena Williams’ experience, it is possibly because of unconscious biases that affect how healthcare providers perceive the patient such as being less likely to listen to patient complaints of pain.
Further, lack of proper, attentive healthcare is also spread amongst most U.S. minority populations. Instances of patients not feeling heard and not receiving the best of care is a very legitimate fear. It ultimately leaves the patient feeling confused, frustrated and distrustful as an unconcerned doctor gets to go home and sleep comfortably while the patient is left suffering.
While there are many reasons for all these inequities in medicine, one of the most discussed amongst patients is improper/lack of communication with the medical caregiver. This is where we must learn to do our part and advocate for ourselves.
Based on my personal experience having a chronic condition dealing with a variety of medical professionals, I’ve experienced both positive and negative aspects. In this article, we will go over some of the methods I have utilized to advocate for myself when dealing with the not-so professional providers.
One of the most important things I emphasize with myself and those dealing with illness is to first and foremost learn about your condition. When you do that, you are better equipped to be able to work together with your doctor in coming up with solutions. You can do this by doing the following:
Familiarize Yourself with the Condition: Study as much as you can by learning the basics of the diagnosis. Find out how it is typically diagnosed (i.e. blood tests, MRIs, X-Rays, stool/urine samples, etc.).
Pay Attention to Symptoms: Learn how symptoms can present so you know what to look out for. For example, if you originally experienced joint pain then a few months down the line you start having headaches and changes in your vision. You are better equipped to know from your personal experience if things are getting worse or better. You will also be able to distinguish illness symptoms from side-effects of medicines and treatments. Also, learn your body’s patterns with any food sensitivities, average energy levels, etc. The best way to keep track is with a notebook.
Community: Connecting with others with the same diagnosis can help you understand how similar or different the disease acts in various people. Also, as stories are shared you can understand how certain therapies have been known to be helpful or harmful in the treatment of the condition.
(Check out my personal health journey here)
Utilize Communication Support
Doing your best to keep lines of communication open with your medical team is very important. It shows the medical staff that you truly care about your health and are willing to stay on top of it. In my experience, if a difficult situation arose, they were very grateful for my insight as it released the extra burden off of them. Plus, it gave me peace of mind to know things were going the way I wanted it to. To me, it’s a matter of teamwork. However, if you are dealing with a “bad apple” who is dismissive and barely attentive, you can implement some of the things I have such as:
Be Direct: Address it to them directly by letting them know how important your health is to you. You are at this appointment because you are here for better management or improvement of your health. Also, make sure to ask questions so you are clear on all procedures, treatments options, etc.
Use Portals: With the increase in technological advances, we can now utilize things such as patient portals where we can message staff directly on their website. Other forms of virtual telemedicine, such as video conferencing also allows us to be more active in our self-care.
Bring Family/Friend: Another thing I have done and encouraged is having a trusted family member/friend who can come to appointments with you. This is great for patients who may have memory issues or for whatever reason is unable to speak. You can have them be your medical representative (consent to treatments, etc.) in case you may be incapable of doing it yourself. Refer to your state laws to learn how to legally establish this.
Consult a Patient Advocate: Seeking out a patient advocate may help. Patient advocates, typically already available in hospitals, clinics, etc. are individuals who can act as a spokesperson between you and your doctor/medical team if there is a problem in communication. They can also help you understand your medical issues as well as insurance and other resource information. You can even seek one here who specializes in your diagnosis.
Fire and Hire
If all else fails, I like to implement one of my favorite things to do when a medical professional wants to act a fool and that is to fire them. If you have options for more than one doctor in your insurance network that you can get to, fire your current one and schedule with a new doctor. You can do this by:
File a Complaint: Medical professionals do have people they answer to. If misconduct, abuse, etc. was present, you can seek out higher ups such as a medical director or even the state board.
Get a Referral: Asking for a referral for a specialist from your primary care physician will help in terms of guaranteed insurance coverage as long as they recommend within your network.
Call Your Insurance: Contact your insurance directly and request a list of physicians in your area or one that is closest to you.
Our health is one of the most important things we have to deal with in life. Medical self-advocacy can come in many forms that involve being educated, keeping clear, open lines of communication and knowing when to find a new professional. Being paired with a doctor who understands your condition, is willing to listen and work with you to make the changes to help you improve your health is key. This results in a win-win situation for both patients and professionals alike.
Remember to stay active in your self-care!