However, we are putting our lives in their hands, and what could be more important than that? I would venture to say that most people, especially those with rare, chronic illnesses have doctors that they absolutely love and have total confidence in their expertise. Meanwhile, others are not so lucky and believe they have limited physician choices with certain illnesses.
As one of those people whose initial diagnosis took nearly a year to get right, and who got sent to all kinds of “specialists,” I found many of the professionals to be nice people. However, many were clueless even after a biopsy was done (probably because it was sent to a lab for the wrong test). I think some of them felt badly about it. Still, they just kept sending me to other specialists, mostly oral, but no one seemed at all clued in.
As a professional myself, I spent years working with, or parallel to, many other professional doctors who also were stymied. I was never told that my symptoms were psychosomatic or psychological by those who knew me. Because my mouth and throat were practically raw, I could not eat or drink many things. I lost weight (maybe 13 pounds after a year which for me is a lot) and at least two physicians thought I had anorexia – even though it was crystal clear how difficult it was for me to eat and to swallow. I was particularly puzzled by dentists, oral surgeons, endodontists, periodontists and even oral pathologists who could not recognize what was happening in my mouth. Skin and blood were literally falling out and my mouth was horrible to look at — a total disaster!
I was not just discouraged at appointments, but frustrated over the time it had taken me away from my livelihood. These specialists who did not know me seemed to think that I had an eating disorder. I quickly dispelled that notion, told them they would not be paid for wasting my time, and left quickly making sure to call my insurance company to stop any payments for services not provided. It was about the principle for me. I believe that a person cannot know everything — I am the first to admit that.
I am thin by nature – so thin that the first time I was in the “normal” range was when I was giving birth. Still, with all the effort I put into keeping weight on, I kept losing weight. Is there anyone out there with these diseases who hasn’t gone through this? Even for those who are overweight to begin with, the initial weight loss with the oral symptoms has to be traumatic.
My primary care provider (PCP), an Internist, was someone I had known since we had been residents together at the hospital where we worked. We had worked well together and shared a mutual respect with a good relationship prior to all my “new” and “mysterious” symptoms. He had absolutely no idea what was going on, but never seemed to grasp the seriousness of my situation, or that it was a medical condition versus a dental issue.
I remembered writing something in my journal and telling him: “I don’t know what is wrong with me but somehow my immune system has been compromised.” About six months into my symptoms I told him I was going to die if he didn’t figure it out. He was not convinced. He said I was being dramatic which was not like me. I told him I had already written my obituary with only the date and cause of death left blank. I think that threw him over the edge because I was 100% sure of that eventual outcome.
As both a patient AND a provider, I firmly believe that all of us know our own bodies better than anyone else possibly can. I also believe we need to learn to “listen” more carefully to what our bodies may be telling us – regardless if we attended medical school or not.
It took more than nine months for me to get the right diagnosis. It was from a dermatologist – although still completely in my mouth at the time. She laughed at me when I politely said I had come for another reason and that the problem seemed only oral and esophageal. She told me her father was a retired dentist, but that my symptoms were definitely dermatological. She was sure it was one of three specific diagnoses that were not previously on my list. She took yet another biopsy and sent it for the correct lab work. At my urging, the lab also procured my previous biopsy (done six months earlier), which was, as it turned out, a textbook case of pemphigus! IF those other “specialists” had done the proper tests on the original biopsies, my diagnosis would have come much more quickly, and maybe my gums would be more intact and I would not be missing some teeth!
I did return to one particular oral surgeon to retrieve my records and saw him literally run (yes, run!) into his office and lock his door until I left the office WITH my records. I made sure his office knew I was returning for the sole purpose of procuring those records. I believe in doing my own due diligence and collecting the facts (cognitive model) before considering options.
I often think back to 2002 and my primary care physician who did not believe my problems were too serious or life threatening. I remember going to the medical library at the university medical center and researching everything I could get my hands on. I remember speaking to the dermatologist and when my primary care physician eventually believed the diagnosis. I know my PCP knew how disappointed I was. Granted, it took another seven years to diagnose my case of Sjögren’s syndrome — which finally explained most of the non-pemphigus symptoms I was experiencing. The Sjögren’s was diagnosed by a rheumatologist who specialized in lupus. I told him I was either totally psychosomatic or that there was definitely something else going on. Fortunately he took appropriate action. That was a true blessing. I believe there are many physicians who really do listen to their patients and see “whole people” and not just symptoms or illnesses. These are the doctors I seek out – and one I try to be in my own psychology practice.
I left my original PCP shortly after the PV diagnosis. After a few other non-successful attempts to find the right care provider, I found one after changing insurance companies. I even found a gynecologist who actually knew the disease in the event it affected me below the belt. I’m happy with my current treatment team because we work well together as patient/physician. Some personalities just don’t seem to work together. I have remained under the care of my rheumatologist for a number of years now and he has no problem making decisions with input from both me and an expert dermatologist.
We as patients are very fortunate that there are experts out there willing to give time and expertise. I never take this for granted, especially since I cannot take prednisone. If not for alternative systemic treatment that only a few people believed in when I was diagnosed, I believe I would not be here today. If not for the generous time of these specialists and experts talking long-distance with my local doctor (at no extra charge to me) and having a local doctor who was willing to ask for help, my life would have ended painfully more than 10 years ago. It has not been an easy road, but I am determined and tenacious – which have served me well over the years. I have been very pleased with my PCP whom I have been seeing for a number of years now. She definitely “listens” and respects her patients.
Amazingly, about a month ago, totally out of the blue, I received a very nice letter from my original PCP whom I had not seen in almost 11 years. I knew he still practiced in the city, but our paths haven’t crossed, except the sharing of a few patients who needed coordination of care. In his letter he made some small talk and also seemed to know how I was doing and about my other diagnosis. Out of sight but not out of mind! He let me know he believed I was a strong person and was sure I had put together a team of competent doctors. Then, surprisingly, he basically let me know he felt he had “failed” me, but that he believed that his failure with me had helped him to improve his care with certain other patients. WOW! I was humbled and felt so empowered.
This letter was very refreshing and very reassuring to me. I have taken several opportunities to present continuing education on pemphigus to the local dental school. This letter has given me HOPE and REASSURANCE that our messages do get across. Yes, we all have the ability to strengthen awareness and to educate: It does not have to a massive audience, but every professional reached makes a difference.
As the Foundation moves forward with our Awareness Campaign, it is my most fervent hope that no matter how frustrated and angry you may get that each if you continue to teach and educate medical professionals about early diagnosis and treatments.
Just don’t give up!
That mindset leads to something called “learned helplessness” – which leads to a core belief system that no matter what you do, nothing will make any difference. This leads to major depression.
Keep going. Move forward. You can all make a difference. All of us can!
How awesome is that?