Note: I wrote this blog post months ago. But I originally decided to pause on publishing it due to the fact that COVID-19 had just begun to strain the fragile medical community. I had zero desire to publicly call out a front-line crisis worker while the crisis was still on-going. However, I recently learned that the doctor that I filed this formal complaint against was fired from his position (DURING the pandemic). It turns out that several others had extremely negative experiences under his “care.” With that new information, I feel that now is an appropriate time to publish these words.
If you suffer from medical mistreatment or abuse, do not be afraid to speak up. Your voice can be used to help prevent further harm.
I typically try to avoid complaining.
It irks me when I read other “advocacy” groups referring to us as “those who suffer with adrenal diseases” or “adrenal disease sufferers.” That type of verbiage is not helpful. Yes, this disease is a difficult beast to manage. But I do not want to view myself as one who suffers. It is incredibly important to watch your phrasing. This is why you shall hear me constantly repeat that I am Clearly Alive.
However, there are times when I do chose to stand up for myself and go, “Hey. That was not right. I am going to lodge a formal complaint.” In 2017, I did so against the TSA. This resulted in all TSA airport management receiving information on Primary Adrenal Insufficiency and were required to share that information with their employees. By my estimation, forty-seven thousand people heard about Primary Adrenal Insufficiency, all because one seasoned TSO refused to give me access to my water and medicine.
That is what I consider productive complaining. This is a formal complaint used for good.
Reporting a Primary Care Physician
At the beginning of February, I had a less than ideal appointment with a new primary care physician. My amazing regular PCP was unavailable to see me as soon as I needed to be seen, and I needed an appointment immediately. After the appointment, and many tears, with the encouragement of a few key individuals, I decided to formally file a formal complaint against him.
His treatment of me was not okay. Instead of sitting silently, I wanted his organization to be made aware. Spoiler alert: I am pleased with the outcome (August 2020 Update: I’m even MORE pleased at the outcome).
On Thursday, January 30th, 2020 I realized I was having trouble breathing. This was not ideal, but I believed that I could keep ahead of it by pulling out my emergency inhaler. That stopped the wheezing and enabled me to have a productive cough.
By that Friday, I realized that I had a full blown cold. Great. My mom urged me to schedule an appointment with my PCP that day. With my Addison’s Disease, a cold is never truly just a cold. My body has a tendency to flip the “common cold” to a sinus infection, ear infection, or pneumonia quite rapidly. However, I was stubborn. I wanted to see if I could beat it with just increasing the rates on my cortisol pump and a slew of over the counter cold remedies.
Side note: I firmly disagree with the recommended advice that a “common cold” should only “require” a 5 mg bump up in your daily hydrocortisone dose. I set my cortisol pump on “super sick rates” (it’s a little less than triple dose) on Friday, January 31st, 2020 and ran them at that elevated level for several days. And you want to know something crazy? I was dropping weight.
My body was burning through that additional cortisol. I had no appetite, could only breath if I maxed out on the inhaler, cough syrup, and decongestants, and I was still unable to maintain my weight. I was clearly sick. (Note: This was also not COVID-19. I have tested negative for anti-bodies.)
On Monday, February 3rd, 2020, I thought I had perhaps turned a corner and was improving! I was proud of myself! Perhaps I could beat a common cold through the use of a cortisol pump and every OTC treatment there is! And then, on that Tuesday February 4th, 2020, the pressure moved into my ears.
I know my body. Typically, a “cold” takes me out once a season. I also know that once it is in my ears, there’s nothing else I can do except treat it with antibiotics. By this point, I was on day six of being miserable while still running my cortisol pump at elevated rates all while dropping weight. It was time to call in additional support.
My healthcare system and insurance offer the option to complete an “eVisit.” According to their website, the following conditions are available for an e-vist: Acne, Back Pain, Allergies, Cold / Flu Symptoms, Constipation, Cough, Diarrhea, Ear problems, Fever, Headache, Insect bites, Vaginal Symptoms, Burns, Cold Sore, Nausea / Vomiting, Red Eye, Rash, Respiratory problems, Sore throat, Urinary Symptoms / UTI, Vaginitis, Heartburn, Sunburn, Sinus Problems, Head Lice, Poison Ivy, Rosacea.
Items in bold were what I was suffering from. I happily whipped out the app on my smartphone and started the e-vist. $30 and the potential to get the antibiotics I knew I needed without having to drive anywhere? Yes please! I filled out the form and hit submit.
Less than thirty minutes later, I received an e-mail back from a PA-C, or a certified physician assistant. I was not particularly happy with his response: “Based on what you shared with me it looks like you have a serious condition that should be evaluated in a face to face office visit.”
I immediately e-mailed back with a “Sad. Ok. I’ll call my PCP.” Honestly, I understood his stance. I openly admitted that I had Addison’s Disease, had been battling this “cold” for almost a week, was still struggling to breath, and was dropping weight. He didn’t want that liability.
The Scheduling of the Appointment
Having already been turned down by the eVisit provider, I called my PCP’s office. I explained that I was in pain, tried to schedule an eVisit, and was told that I had to go see an actual human to be evaluated. The sweet lady told me that there were no appointments available for my doctor or even at that practice for that day. However, she could schedule a visit at one of their sister locations.
Would 1:00pm work? I glanced at my watch. That was only an hour and a half away. Yup. I would take the 1:00pm appointment on Tuesday, February 4th 2020 with a random PCP that I had never met before. By that point, I was desperate for anything. I was in pain and I was over it. Plus, I felt like an appointment with a medical practice where I had already established care would be superior than an urgent care or a walk-in clinic. They have my medical history in MyChart and know me, even if the individual doctor did not.
Before my appointment, I stopped by my house in order to gather together all of my OTC treatments and place them in a bag. I did not want to lie to the doctor. Instead, I wanted to show him exactly what I had already been trying for several days and plead for an elevated form of treatment. I needed help and I was hopeful he could provide it.
The Actual Appointment
I arrived early, with my large bag of over the counter medication. After the intake nurse took all my vitals and history, a seemingly young white male doctor entered the room. I dove straight into the background, the OTC treatments I tried, the fact that I was still dropping weight on an elevated steroid dose, and how I believed it was time for antibiotics and a new rescue inhaler because mine had expired.
Additionally, I explained that the eVisit doctor told me to go see an actual human.
After listening to my chest, this PCP whom I had never met before informed me that he didn’t believe that I was “that sick,” because I actually “sound fine” and he was “probably treating nothing” but he guessed if I really wanted those antibiotics, he would prescribe a five day course.
I wanted to cry.
Over the years, I have learned how to downplay my pain in an attempt to not worry others. I would be at the point of collapse but telling people, “Oh no, I’m fine. Do not worry about me.” For me to work up the courage to step into a doctor’s office and admit that I need help was HUGE. The last thing that I needed was some arrogant white male to tell me that I actually “sound fine.”
Additionally, of course my breathing would “sound fine!” I had just dosed on my inhaler not even an hour prior! That was the only way that I was breathing! Never did I try to hide from him the large amount of OTC remedies I was on. But after six days, it was not enough and I wanted him to help! I did not need him to judge!
He reluctantly gave me the antibiotics, and also made a snide comment with how he could not find the inhaler in my prescribed medicine list through that organization. Yup. Want to know why? I got that script from an ER in California one Christmas Eve when I could not stop wheezing. This was why I was asking for a new backup rescue inhaler. I do not use it often. But when I need it, I desperately need it.
At the end of the appointment, I walked out with two new prescriptions along with the printed after visit summary with his suggestions. This included things such as “Please try honey, vick’s vapor rub, lozenges and humidifier for cough and sore throat.”
I got in my car and just started sobbing. Try honey? I have Addison’s Disease and have dropped 5 lbs without even trying and your suggestion is honey and lozenges?!
The Decision to File a Formal Complaint
I texted my mom about the appointment, and she called me for a follow up. Sobbing, I told her I felt ridiculous stepping foot in that office. Yes, I did get the prescriptions I wanted, but perhaps he was right. Perhaps I wasn’t really “that sick.”
She talked some sense into me. I did the right thing by seeking out additional care, and in all honesty, I probably should not have waited that long. Additionally, if I had called my good PCP at the start of symptoms (on that Friday, when she first suggested it), perhaps I could have seen my GOOD PCP instead of being at the mercy of an arrogant white male with a God-complex.
She also suggested that I look into filing a formal complaint.
This was scary new territory for me. Even after an ER almost killed me in 2013, I never told that hospital system about it. The experience was too traumatic and I did not want to relive it. But then I remembered something a friend had said only a few days prior.
Each time I report an arrogant or ignorant medical professional to their licensing body for mistreating me, under-treating, or overlooking my rare disease/rare illness symptoms, I know I make a difference because I’m proud to say I’ve never lost any of my well evidenced and researched arguments yet!Nichole, An Amazing Advocate for Rare Diseases
Nichole regularly calls out medical providers after they mistreat, under-treat, or ignore her. Could I have the strength to do the same? The facts were on my side. A medical provider told me to seek additional treatment, and then I was invalidated for doing so. Perhaps my voice of, “Hey, this was not ok” could be used to prevent the situation from repeating.
The Formal Complaint Process
I was able to share my story with the practice administrator over the phone on Monday, February 10th, 2020. She took notes, and I gave her permission to look into my medical file. Even if this doctor denied that he told me I wasn’t “that sick” and he was “probably treating nothing,” he could not deny the fact that he wrote in my medical record to “try honey, vick’s vapor rub, lozenges and humidifier.” He also could not deny that in my medical record there was another provider telling me to seek additional care less than two hours prior.
The kind practice administrator explained to me that they take these reports very seriously. Both the lead physician and the medical director would look over both her notes and my medical history. For the next step, they would then sit down with the physician. She promised a follow up phone call with me within the week to provide an update.
On Friday, February 14th, 2020 I received that follow up phone call from her. She stressed how she never wants anyone in that practice to feel invalidated or ignored. We should never be afraid to go to the doctor. She stated her appreciation that I brought this episode to her attention, as it was used as a teaching moment for the particular physician. Both the lead physician and the medical director sat down and coached him on how to approach patients differently. Perhaps my story could prevent another person from suffering (August 2020 Update: Again, he had so many formal complaints filed against him that they FIRED him! DURING COVID-19!).
Over the years, I have actively worked on developing my “advocate voice.” This did not happen overnight. In the beginning, my mom fought for me and advocated for me. But as I outgrew childhood, she gradually transferred that role to me.
However, advocating for oneself (or someone else!) takes immense strength and energy. There is always that chance that they come back to you and say, “Nah. It really wasn’t that bad.” The fear of that alone has kept me silent in way too many instances.
But what if I use my voice for positive change? What if stating “No. Do not invalidate me, or anyone for that matter” could actually be heard? What if this doctor changed and corrected his course due to the formal complaint against him? Perhaps he was humble enough to listen to the feedback? What if this formal complaint changes things?
Personally, I am humbled with how seriously the medical practice took my formal complaint. My fear of being labeled a difficult hysterical female was unfounded. After all, I am not some crazy woman. I have now lived longer with this disease diagnosis than without it. Sorry doctor, but I am the expert on my rare disease. Not you. The practice administrator validated me.
Validation was all that I was after.
Amber’s Tips on Filing a Formal Complaint Against Medical Providers
- Remain calm. Try to not show any emotions.
- Have the facts and timeline gathered together and written down.
- Request education. You don’t want revenge or restitution. You want to prevent others from suffering.
- Speak up so that others may remain Clearly Alive.