Much like when we’re kids, we think life like fairy tales have happy endings. Similarly, I grew up thinking doctors were gods. When I got sick, I expected doctors would heal me…and they did. Not to mention, my dad is a doctor, so I think I was bound by that logic that doctors always knew best.
When my medical journey began, I didn’t seek multiple opinions. Instead, I questioned my own failing body as it continued to get worse and worse over time. Between January 2014 and March 2015, I kept going back to the same “renowned” institution seeking answers with the exception that I had to also find a primary care physician (PCP) in my home state of Colorado (and thank god I did, because ironically he would become one of my life savers, who is still captain of my care team). After my initial visit in January 2014 to the institution, which yielded little beyond diagnoses of “lactose intolerance” and “mild orthostatic intolerance (OI)” – the pervading theory seemed to be that my body was struggling to bounce back from the nine months of the TB medication that I had to take and that I could be suffering from depression; because at that time, the worst symptom I was contending with was fatigue. At this point in my medical journey, I didn’t know enough to question this coordinating physician, other than to know that I felt worse than the inability to bounce back and that I knew I wasn’t depressed. I was “ordered” to drink lots of water (which I already did), increase my salt intake (I already ate a salty diet), purchase medical compression socks, and start a lactose free diet – and that was all folks, besides researching local PCPs in Colorado.
Despite following the “doctor’s orders,” a month later, I did not feel any better. That same month, in February 2014, I would “interview” a local PCP in Colorado, who was shocked that I had not been tested for autoimmune antibodies at the institution a month earlier. Based on my symptoms, history, and family history, he was convinced I had an autoimmune disease. Well readers, he was right – and I finally felt some sort of validation and relief. My blood work came back positive with a very high SSA and positive ANA. That should have been the sign that he knew way more than the doctors at the institution…
Stupidly (hind sight is always 20/20 they say, right?), I contacted the coordinating physician at the institution and she had me return a month later to see a rheumatologist, who confirmed I had early Sjogren’s at that time in March 2014. This is when I was started on my first prescription drug, Plaquenil (the generic known as hydroxychloroquine). Ironically, the coordinating physician at the institution was still talking about depression. So I took the bait and let her send me to a psychiatrist during this visit too. Depression was ruled out – maybe only to her surprise. Yet the coordinating physician still lectured me. I understand that chronic illness and depression can go hand in hand. However, depression was NOT causing my symptoms. And fortunately still to this day, I have yet to succumb to depression; perhaps depression is not in my DNA, perhaps it is my amazing supportive network, or perhaps it is my *sick sense of humor* (pun intended). (To those patients who are suffering from depression, please don’t be ashamed to seek help, if you are not doing so already. Living with chronic illness(es) is not easy.)
My body would continue to decline much to the dismay of my local PCP who continued to monitor me…and I would return to the institution, a year later, in March 2015. The Rheumatologist would add early connective tissue disease to the Sjogren’s diagnosis. And this time my visit would include seeing a neurologist. He would review my files on a computer screen. He would take my “mild OI” diagnosis a step further and say that “I was on the POTS spectrum” and would give me a “migraine” diagnosis as well. After researching what POTS was, I was furious. The tilt table test that I had done in January 2014, more than a year before, clearly showed I had POTS. Forget the “mild OI” diagnosis or “I was on the POTS spectrum” – I had POTS, more than 30 beats per minute within 10 minutes. Later, I would share the results with other specialists who would say, how were you not diagnosed with POTS initially? And by the way, the neurologist never examined me; yet the bill almost $800 said he did. And to add insult to injury, the coordinating physician, continued to tell me that I was just depressed – even in front of my mother.
Funny how this “renowned” institution never even ran autoimmune antibodies (instead it was a local primary care doctor in Colorado who had), funny how they continued to tell me I was depressed, funny how the neurologist lied and said he examined me, funny how they told me I had “mild OI” when I was walking around with POTS. It took not one, not two, but three visits to this institution for me to learn that doctors are not gods. I was finally done with this “renowned” institution after three visits and my faith in doctors would be forever shattered.
I wish I realized doctors are not gods during the first visit – or at least, after the first visit. But I guess you can’t fault me for being persistent and wanting to believe in the medical profession, particularly in the doctors at this “renowned” institution. This experience taught me that unless you have a black and white case like a broken bone, doctors will have multiple opinions, may not care, may not take you seriously, may think you are a basket case, may think it’s all in your head, may think you are depressed, may miss diagnoses completely, and/or may dismiss test results. Needless to say, I have experienced it all except for being called crazy or a hypochondriac – at least not to my face. And I continue to face doctors who don’t deserve to be called doctors. Yet now I am brave enough to “fire” them when I want to, because I don’t have to give them multiple chances to treat me like “crap”, once is damaging enough. I am equally empowered enough now to seek multiple opinions or to have multiple doctors from my care team weigh in when I feel it’s necessary.
I’m also really OK when a doctor says, “I don’t know” or admit when they have made a mistake or take the time to investigate with me. But I am not OK with those doctors who project their insecurities on me or lie. Despite all these devastating experiences, I continue to treat doctors with respect and so I expect the same respect in return, at the very least. I am not perfect and will never be perfect, especially when my brain is struggling to function. We are all human, even doctors. We all make mistakes, even doctors. None of us are god, especially not doctors. As patients we too have a voice in our own care, so don’t be afraid to question your doctors; sometimes it may just save your life.
Please note that I have greatly shortened the events that took place during my three trips to this un-named institution in this post; it would likely be a three hundred page novel otherwise. The dates and other details however are factual and accurate – and continue to haunt me, which is why I am hoping by sharing my experience that patients continue to respect the profession but needn’t be reverent, especially in situations where your character is maligned instead of being properly diagnosed.