12 Suggestions If You Are Dealing With an Antagonistic Doctor
I am fairly competent at advocating for my health in the last nine-plus years of dealing with dysautonomia and several other chronic conditions. But the treatment I received recently left me frustrated and questioning what I could do better the next time I deal with antagonistic medical personnel.
I arrived at the hospital for a scheduled endoscopic retrograde cholangiopancreatography (ERCP). An ERCP is a procedure that combines upper gastrointestinal endoscopy and x-rays to treat problems of the bile and pancreatic ducts. The gastroenterologist surmised I was dealing with pancreatitis. I had elevated bloodwork results and many attacks in the last four months. The attacks caused excruciating pain in my upper right side through my back. It was the kind of pain that took my breath away and the only thing I could do was lie still and try to breathe.
I had an ERCP performed almost a year ago for the same problem. At that time, a stent was placed (and later removed); the sphincter of Oddi muscle was cut and stretched and sludge removed. It was hoped this procedure would cure the pancreatitis but it did not.
As a result, I headed to the hospital for my second ERCP. After checking in and dressing in a medical gown, the nurse took vitals and reviewed my complex medical history. Blood pressure and heart rate were elevated. The anesthesiologist came over to talk with me and seemed to immediately focus on blood pressure, which I knew was within the parameters the primary doctor deemed acceptable. I explained the blood pressure was most likely high due to the three bags of fluid I received the previous day (as fluids are necessary for me before medical procedures); the medication I take to avoid presyncopy; poor sleep and stress. While it sounds counterintuitive, once an IV saline line begins, my blood pressure typically lowers.
The anesthesiologist seemed uninterested in anything I said and expressed displeasure at the medication I take to keep blood pressure up to stay conscious. I explained the cardiologist’s reasoning for the medication which was followed with the anesthesiologist saying he did not understand that treatment.
“You should see functional medicine at Cleveland Clinic,” he said. “They will get to the root cause of your dysautonomia and cure you. They even cure multiple sclerosis.”
This statement left me frustrated and angry. I actively volunteer with Dysautonomia International, a nonprofit that provides education and support to patients and helps lead dysautonomia research worldwide. I know for a fact there is currently no cure for dysautonomia. There is, however, promising research to help treat this population more effectively. Functional medicine, as this doctor suggested, is not a cure. I have a team of doctors who help me live my best life despite all my chronic problems. I am willing to try different modalities, but to say functional medicine would provide a cure is absurd. I believe this doctor was intimating that my issues were psychiatric.
The specialists I see don’t know what the “root” cause of dysautonomia is but we do know that my heart started slowing down in my 20s after a bout with mononucleosis. We also know that mitochondria myopathy, Sjögren’s syndrome, Ehlers-Danlos syndrome and autonomic neuropathy seem intertwined.
I am uncertain why this anesthesiologist provided unsolicited, inaccurate advice but I know as he kept talking and watching the monitor, my blood pressure rose. I understand it’s his job to keep me stable during surgery, but it was not in his scope to suggest functional medicine would cure me.
After nearly three hours waiting and checking my vitals, I left the hospital. The ERCP is rescheduled. A few days removed from this experience, I wonder two things; was this doctor afraid of my complex medical history or was he just too lazy to deal with me?
I won’t get that answer but have thought of things you and I can do to alleviate another such problem.
1. Meet with anesthesiologists ahead of time to discuss our medical needs. (I have done this in the past but had not thought there would be an issue with this procedure).
2. Have a letter from a primary doctor and/or dysautonomia specialist stating my need for fluids to help throughout any procedure, and any other helpful information.
3. Try to stay calm if another doctor spouts inaccurate information.
4. Cancel a procedure more quickly if we’re being dismissed. Remember that we don’t have to proceed if we are receiving poor treatment. We have the final say on what is done.
5. Find an advocate. My two nurses were great and tried to resolve these problems for me.
6. Let people in power know of the mistreatment. I emailed a letter to my gastroenterologist, dysautonomia specialist and primary care doctor. This resulted in two phone calls and one email to me and the assurance that this anesthesiologist will not be on my case.
7. Be direct but pleasant. Speak of our needs and the reasons for such.
8. Ask for the clinical director or someone else in charge if we are not satisfied with our situations. I spoke to the clinical director, who apologized for the treatment I received and guaranteed me the anesthesiologist would not be on my case again.
9. Handle the problem but don’t dwell on it. After all, we are not the arrogant, misinformed person.
10. Talk about the experience with someone you trust. Chronic illness is difficult to handle; add mistreatment to the mix and it multiplies the issue. I have a counselor who helps me deal with the many facets of chronic illness. This is very helpful.
11. Keep a sense of humor. Some of the things we deal with are so absurd, you need to laugh sometimes.
12. Trust your knowledge and instinct.
Photo by Ant Rozetsky on Unsplash