Advocating for Yourself in Today’s Healthcare System: Some Recommendations from Your Pelvic Floor Therapist
I just want to go ahead and preface this with the fact that there may be some health triggers in this post and also that I have been diagnosed with a form of cancer that is usually very treatable with a good prognosis and I have not been struggling with cancer as long as many people are. I do not want to present this like I am an expert after I’ve had cancer for a whole 5 minutes. However, after this recent experience, I definitely have seen some interesting themes and areas of potential improvement in our healthcare system and it was time to update the Practically Perfect community as well.
Welcome to a blog about sticking up for yourself in a medical system that does not always support patients in the best way possible. After having been diagnosed with Papillary Thyroid Cancer in January, 2024, I’ve been navigating the system from a patient’s perspective and I have some things to say!
First, I don’t think that people realize how expensive it is to be sick. I know I never knew the full extent and really only knew about insurance benefits from a physical therapy perspective. Being very fortunate enough to have had insurance through a state university for years versus having a private plan for a self employed person also made a BIG difference. Having a serious medical issue means missed work, co-pays, deductibles, coinsurance, etc. It means prescriptions, equipment, travel and most important – time. I find my patients don’t always understand their benefits and sadly get surprised by bills from deductibles or copays they didn’t know about. Even knowing my benefits after having researched and selected a plan, I still felt surprised by the amount of bills after my thyroid testing and surgery. I recommend if using insurance to call up your company and find out what benefits you have and how they apply to each provider you will have to see. Use the insurance portal and your supplemental materials to help you navigate.
It’s a shame but in our medical system we have to advocate for ourselves. I wish that there was someone like Dr. House and his team that existed to put together all the different pieces of a patient puzzle, working to create a plan of care to help find a solution. Sadly, when a person typically has an illness or a problem, they can see anywhere from 3 to 10 medical providers and still potentially come away without a clear plan of care or action. As our healthcare system evolves to have different niche practices and specialties, different providers are unwilling to address areas which they do not feel that they are experts on. This results in seeing a primary care provider only to be sent off to different experts. I love a good expert but what I frequently see happen is that one expert looks at a patient from one lens, another expert looks from another lens, another expert looks from a different perspective, and potentially there is not have a lot of crossing over or collaboration in the plan of care
When we go to a provider, we want answers. What no one gets told is that frequently there is not an immediate answer, if there is an answer at all. When you have cancer, there may not be an immediate diagnosis, immediate knowing of the severity, and also no immediate knowing of when the cancer is cured. Having cancer is a waiting game. Usually, you get diagnosed with something that looks suspicious. Then you get testing to see if that suspiciousness is actually pathological. Then consultation with providers. Then they do more testing to see how pathological. Then you have more testing to see if you need additional interventions. Then you get to wait and see if the cancer is gone or has come back.
My surgery to remove my thyroid was on February 15th, 2024 and they were able to remove my complete thyroid and one parathyroid gland. They biopsied eight local lymph nodes and pathology came back that there was no lymph node involvement in that area. They were surprised that the type of papillary thyroid cancer that I had was more aggressive than the expected as papillary thyroid cancer is usually pretty chill as far as cancers go. At that point my ENT surgeon released me and returned me back to my endocrinologist who would manage my postoperative monitoring. I’d have regular blood work and ultrasounds to monitor my condition. If there is something called thyroglobulin in my bloodstream, that would mean that there is still thyroid cancer somewhere within my system and I will require radioactive iodine treatment. If my levels look good, I will continue to be monitored on a regular basis to ensure that nothing troublesome has popped up.
After my conversation with my local endocrinologist, I have also decided to get a second opinion in a different medical system to make sure I had peace of mind. This got me thinking, would I feel as comfortable navigating through these appointments, decisions, and appointments if I wasn’t a medical professional. The answer was “probably not.” I myself felt like I was being somewhat rebellious because I didn’t want to wait 6 months for further answers on how my body was handling its cancer journey.
While I sat in a waiting room, I made a list of some ways that a person can advocate for themself including the following. I also made a handy dandy little handout to help you do some of these things, available at the end of this blog!
Keep good records
Create a list of all of your medical providers, who manages what, who prescribes what and how often you see them. Start a list of appointments with short descriptions of each visit – who, what, where, when, why, how…
Be proactive with your medications and supplements
Create an up-to-date list of medications and supplements with their purpose, their dosage and when you take them.
Don’t be afraid to ask for a second opinion
A provider may not feel like your “cup of tea” or a good fit. Feel free to seek out a second opinion so you have options and can make educated decisions.
Don’t be afraid to ask for clarification if you don’t understand and answer
Providers are people too and sometimes they need reminders to explain things in a way YOU understand. Not everyone processes and learns in the same way. If you don’t understand say something like “Thank you for that explanation, but I’m still not fully understanding, can you elaborate/repeat/describe/etc.”
Get it in writing
It is your right to have answers in writing, so request a copy of your test results, educational materials, and office visit summaries.
Loop everyone in
Keep your whole team in the loop, make sure that your records are being sent to all of your providers so they can look at you as a whole person and a whole picture.
Bring a support person with you to your appointments
This will help you to absorb the information. When we are getting bad news, it can be hard to understand, process, or focus. Having an additional person in the room can help to fill in the blanks if you forget something, help you to ask questions, or just give you support to keep you calmer during a stressful time.
Listen to your body and trust your intuition
If you don’t think something works for you, make sure to tell your provider that. If you know from past experiences that something is not a good option for your body, tell your provider.
As a provider in niche areas, I think I must get to hear people’s tales of woe in navigating the healthcare system more than others. I get to hear stories of people experiencing medical trauma or being medically gaslit by providers and it is terrible. The amount of people wandering through the health system for wellness or during an injury or illness is tragic. You’ll see a document that you can download and fill in to help you keep your medical management organized.
Some additional tips in finding quality providers include using a certification or national organization as a way to find them. Using word of mouth and taking recommendations from providers you know and trust is also a great way to find link minded and trust worthy providers. Beware of red flags for providers including a lack of getting your consent, not hearing your concerns, not respecting your rights and autonomy as patients. If something doesn’t feel right, trust your gut and move on.
Some other notes…
What is medical gaslighting?
Medical gaslighting occurs when a medical professional undermines or dismisses a patient’s symptoms, experiences, or concerns, making them doubt their own perceptions or sanity. It can involve downplaying symptoms, attributing them to psychological causes without proper evaluation, or implying that the patient is exaggerating or imagining their illness. This can lead to delayed diagnosis, inadequate treatment, and significant emotional distress for the patient. It’s a serious issue that undermines trust in healthcare and can have detrimental effects on patient outcomes.
What is medical trauma?
Medical trauma refers to the emotional and psychological distress experienced by individuals as a result of their interactions with the healthcare system. This trauma can stem from various sources, including:
- Physical Trauma: This involves the pain, discomfort, and potential complications associated with medical procedures, surgeries, or treatments. Think about being forced to have an exam you were not prepared for or did not want to have.
- Emotional Trauma: Patients may experience emotional distress due to receiving difficult diagnoses, witnessing traumatic events in medical settings, or feeling ignored or invalidated by healthcare providers. Think about receiving news or a diagnosis without finesse and care given with the delivery.
- Loss of Control: Feeling powerless or having decisions about their care taken away can contribute to medical trauma.
- Neglect or Abuse: Instances of neglect, mistreatment, or abuse by healthcare providers can lead to significant psychological harm. This is highly prevalent in populations that are at risk including pediatric patients and the elderly.
- Medical Errors: Being subjected to medical errors, misdiagnoses, or unnecessary procedures can erode trust in the healthcare system and cause lasting trauma.
- Chronic Illness or Disability: Coping with a chronic illness or disability and the associated medical interventions can also lead to medical trauma over time.
Medical trauma can manifest as anxiety, depression, post-traumatic stress disorder (PTSD), or other mental health conditions. It’s important for healthcare providers to recognize the potential for medical trauma and provide empathetic, patient-centered care to mitigate its effects.
