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Last week, I had an appointment with an endocrinologist for the first time since being diagnosed with an endocrine diseaseâHashimoto's thyroiditis. Notable mainly because I was diagnosed in 2019, and this is the first time I have seen a specialist. My general practitioner not only did not refer me to an endocrinologist but adamantly insisted that I did not need to see one for treatment. In my entry this evening, I would like to describe my experiences and discuss the extent of medical gaslighting that can happen, and explore why I continued to listen to what is objectively faulty medical advice for so long.
Before beginning, I will say that my persistence in following a destructive medical path is the part I struggle with most. Although I feel intellectually like my anger is a bit misplaced (directed toward the self solely instead of including external sources of pain), it is where I tend to begin processing through trauma, this blame. In the wake of a long battle, I am left feeling stupid for having let three years pass with no measure of improvementâin fact, I have gotten worse. Anyone that knows me can tell you that I loathe feeling stupidâI put far too much stock in the value of independence and leveraging knowledge at an early age due to an obsession with A WRINKLE IN TIME. Unfortunately, the circumstances of my life have made it easy to hold onto knowledge as a source of my value. So what does one do when that quality fails?
It is difficult, I think, for anyone not to internalize health issues as being one's own fault. Between difficulty finding medical professionals that will listen to you and the fulcrum of individuality as a cultural philosophy in North America, it is no wonder that we all feel an increasing need to micromanage our health in pursuit of an ill-defined concept of wellness. [1] Indeed, the medicalization model of chronic illness has increased pressure on the individual to comply with treatment without considering a social model of disability and chronic illness. [2] Take all of that and then add abuse and trauma; it can become debilitating. We are told to advocate for ourselves in our medical treatment, but this is a complicated and energy-draining task, especially with other intersecting difficulties.
Neurodiverse people, queer people, trans people, people of color, and cis women all experience elevated rates of medical bias. I am a queer cis woman who is outwardly gender non-conforming, I have been diagnosed with ADHD and PTSD, and I have begun to suspect that I live somewhere on the Autism Spectrum. It doesn't matter to me at this point in my life where that is; I am content to understand that I occupy space within the neurodiversity spectrum as a part of my identity, not as a medicalized diagnosis. [3] Many behavioral traits among neurodivergent identities are stigmatizedâADHDers are looked at as anxious and difficult, and Autistics are looked at as juvenile and frequently interpreted as having other stigmatized identities such as narcissistic personality disorder or borderline personality disorder. [4] I do wonder how my behavior could have led to some of my treatment that I would classify as dehumanizing. I wonder how being open about my sexuality (you are supposed to be honest with your doctor, right?) and my gender could have compounded that.
I do not mean to indicate that anyone maliciously targeted any intersecting aspects of my identity. However, it is essential to consider how medical bias plays out statistically when looking at individual anecdotes. Could bias have played a part in how I was treated? Absolutely. Will I ever be able to know for sure or point to definitive evidence? Likely not! Bias is nuanced, amorphous, and elusive primarily to people acting in ways aligned with their internalized bias. Actions made as a result of these biases are frequently subtle and left to be interpreted by the victim of stigma. Human brains are funny little things, and we are innately quite good at creating biases that are directly counter to our social models. When faced with uncertaintyâand I would argue that both patient and doctor are faced with a lot of uncertainty whenever encountering a medical issueâthere are specific heuristics in thinking that trend toward cognitive bias. [5] Regardless, there is a real impact that is genuinely harmful to the patient.
At the point of my Hashimoto's diagnosis, I had been a fit and active adult. I had lost what I considered to be excess weight several years prior and was an avid half-marathoner. I had been getting more and more ill, coupled with a rapid rise in my weight, but I was hesitant to go to my GP because I had convinced myself that the symptoms would pass. I had come to this point due to a horrible experience with an IUD just prior to the onset of these symptoms.
A year before my diagnosis, I received a diagnosis of a PFO in my heart after the discovery of a heart murmur. I grew up poor and never had a regular physician, so this murmur went unnoticed. While it turned out to be minor, and treatment amounted to being cognizant of symptoms during exercise and taking daily aspirin, it was a stressful process (though my cardiologist is terrific). While this was happening, I also had a severe reaction to the Mirena IUD. The gynecologist to whom I was referred for insertion and continued management of my gynecological care told me that the pain was normal and to wait six months before discussing removal. When I called again because the pain was excruciating, they treated me as though I was overreacting to something considered to be "normal."
Ignoring for now that it is alarming that there is a certain tolerance for a threshold of pain considered to be typical for women, in my own case, it was distressing to be dismissed without considering that the course we were on simply could not be the right fit (nothing HAD to be technically "wrong" to chose to move in a different direction). When I started to have severe hormonal swings, I was told that the progestin in the IUD only delivers hormones locally and that it does not enter the bloodstream or travel through the whole body. Even at the time, without the benefit of three years of research, I thought this was insane. However, with the continued encouragement of both my gynecologist and my GP, I waited the requisite time. I was in the office six months to the hour since I had gone in for my initial insertion.
An ultrasound revealed that inflammation was so bad that the IUD was beginning to perforate the uterine wall. I felt simultaneously extremely vindicated and filled with shame and anger. How did I let this go on for so long? I felt beaten up by the whole experience, and I felt ashamed for not advocating for myself more effectively. I was profoundly relieved upon removal, both physically and emotionally, that I didn't even mind the genuinely alarming amount of blood that resulted (I was at the hospital two days later due to blood loss, though fortunately, I was fine).
These circumstances are ultimately why I would write off my worsening symptoms, though. Because I would point to the immediate past and could reasonably say, "This horrible thing was causing my discomfort." I could believe that it would go away as my system adapted to lowering inflammation. Ironically, I adopted the same stance imposed on me from the beginningâwait out the pain and discomfort. I had a lot of fear around going back to the doctor. When I expressed my pain, I was not believed; when I described my symptoms, I was treated as though I was hysterical despite showing very little (if any) emotion in the exam room. I was afraid of being written off again, so I chose to believe it would go away on its own.
In retrospect, this pattern is very familiar to me; it is a groove that I have greased for most of my life. When you are a child of a specific type of emotional abuse, you become very good at taking responsibility for things that do not belong to you. So you become exceptionally proficient at compartmentalizing your pain. I did not recognize the beginning of a long pattern with my GP for what it was, partly because it was a part of my comfort zone and partly because of my uncanny ability to couple imposter syndrome with lack of emotion and compartmentalization. In contentious circumstances, my default is to believe that I could not possibly be correct, especially in the face of expertise (how I viewed my doctor at the time).
Additionally, this is further complicated by dissociative body dysmorphia. I would rather not acknowledge that I have a body at all. I imagine being a spaceshipâa being of cold metal and an alive positronic neurological system. I can house and comfort my friends and loved ones, but my body has no other feeling or flesh. It only senses the vacuum of space, which is nothingness. [6] When I experience pain, I compartmentalize it into a tiny box in a dark corner of my mind, giving me a very high tolerance but very little awareness of how to communicate it effectively.
My medical experiences put me in my body in an almost violent way, and ironically that negligence was dehumanizingânot my spaceship gambit.
Eventually, I couldn't tolerate the illness any longer. I knew something had to change. When I finally went in to see my GP, I had a battery of blood tests done, and my thyroid antibodies were so high that I ran out of space on the graph in my automatically generated chart. I received news of my diagnosis via a phone call from a PA and was given a prescription for the lowest possible dose of Synthroid (I am a big advocate for minimum effective dose, so this was good!). I did not speak to my doctor about the diagnosis. I was given basic information about Hashimoto's and left to figure it out on my own. At this point, my new medication made me feel a bit better, and I thought things were going well with my treatment. So how was I to know that symptoms would begin to return so very soon after this appointment? At my next blood draw six months later (a year from diagnosis), I mentioned this and was dismissed.
My doctor would only test TSH (an incomplete picture and insufficient to treat the illness if the symptoms are not managed). My values would yo-yo a bit within a "normal" range but always on the high end of that windowâwhich I have since discovered is much higher than my endocrinologist would consider ideal. For two years, my weight continued to climb, my energy levels continued to drop, and I have had such bad periods of dizziness and brain fog that I have an even more difficult time completing tasks than my ADHDer brain already had.
When I went back to the doctor, they told me that my levels were normal and then repeatedly asked if I was sure it was not anxiety. My GP's nurse practitioner repeatedly insinuated that I was crazy and hysterical from anxiety and made me take a pregnancy test despite the fact that I was menstruating and had not had intercourse. It was humiliating. Over this hour-long appointment, I was made to feel as though nothing I said had any credibility and that I did not have an awareness of or autonomy over my own body. She repeatedly told me that I needed to lose weight, and my doctor heavily implied that my weight was the cause of my medical issues. No matter that I have a relatively good diet and try to be active, even though the symptoms of my illness make that almost impossible for me in my current state.
This cycle of weight bias took a heavy toll on me. My self-worth plummeted. I felt that my body had betrayed me and that my doctor blamed meâas though I had chosen this. My uncontrolled illness was causing typical symptoms. Those symptoms led to the additional manifestation of weight gain. Because the GP did not effectively treat my disease, it continued to be an issue. This is all very logical to me. Then, I would step into the doctor's office, be weighed, and then condescendingly told that my weight was a concern and that I would not get well if I didn't do something to control it.
Earlier I mentioned various identities that can cause medical bias. Fatness is stigmatized across all identities and pathologized to the harm of many, many people. [7] As a woman who is now technically obese according to the BMI scale (I will not go into this extensively. There is a mountain of literature written on the ineffectiveness and harm of that "tool."), I am now experiencing dismissal of my legitimate medical issues that began as unrelated to weight entirely. The difference in how I was treated and the humanity I was afforded as a thin woman versus a fat one is absurd. At this point, I am disinterested in fat loss as a primary focus of my treatment. There is no literature to support this stigma. I am, however, interested in improving my health.
A year and a half ago, I went back to the doctor for pain in the front of my throat. The PA who saw me said that I had probably just strained the muscles in that areaâan utterly bonkers assessmentâand told me I was fine. It is significant to mention that, by this time, I had begun reading about Hashimoto's, endocrine disorders, hormonal issues, and autoimmune diseases extensively. I was certain it was no injury (you would think I would remember blunt force to the trachea), but the PA dismissed my concern when I tried to push back on her assessment. She palpated my throat area but did not conduct a "swallow test," where the doctor places their hands on either side of the thyroid gland with light pressure and feels how it travels on the throat while the patient swallows. Even if touch does not reveal noticeable inflammation, the symptoms are common for thyroid inflammation, and swelling can occur inwardly, pressing against the trachea. Unfortunately, I have never received an ultrasound. They did no blood tests to determine if something was happening to cause inflammation. These details become important when discussing my recent appointment.
As an aside, and unrelated to Hashimoto's, I had a terrible bout of shingles last year (hello, COVID-time stress multiplier!) My doctor did not respond to my online query (which included several pictures and a detailed breakdown of my symptoms and when they began. Instead, the (cursed) nurse practitioner of my previous horrible experience returned my message and told me to put hydrocortisone cream on the rash. Fortunately, both my friend and my MIL had previously had shingles, so I went to urgent care, where a kind and generous physician appropriately diagnosed me, treated me with respect, and immediately put me on antivirals. I was right at the end of the 72-hour window in which it is ideal to start medication (reduced risk of neuralgia). If I had waited seven days to put hydrocortisone cream on a viral outbreak, I wonder what would have happened?
All of this is to say that at every turn, I have felt gaslit into feeling like maybe I am simply crazy or that I am exaggerating my symptoms, either related or unrelated to chronic illness. I was fearful of continuing to bring up what I had read because I was then treated as though I were a hypochondriac who "went to Google university." Or that I was anxious and therefore invalid. Even if these symptoms were caused by anxiety, they are real symptoms that deserve to be addressed with compassion. I was also terrified of going to a different doctorâwhat if that one was worse than the last two? It felt utterly hopeless. I used COVID as a convenient emotional crutch to put off even thinking about changing treatment course and vetting new doctors because the thought of having to deal with any doctor for any reason had become debilitating.
All of that isn't to say that I don't have a lot of compassion for all medical practitioners after the past two years, especially because the entire state was in crisis standards of care for a large portion of last year, our hospital beds full with COVID patients. I do think that the past two years have been a terrible time to treat any long-standing health problem as medical staff are stressed, overworked, and dealing with their emotional fallout from the current climate and circumstances. My GP is connected with the most prominent local hospital, and I am sure there was an added toll for her even though she is primarily focused on internal medicine and was not treating COVID patients.
Because my doctor did not refer me to an endocrinologist (for which, considering my experiences, I am now somewhat grateful), I did an exhaustive search on every endocrinologist in my area. I read all available reviews and asked everyone I knew who might have some insight. Ultimately, I landed in the office that I went to last week. When I say that the difference was profound, I am not exaggerating.
When asked when the last time I had a blood test was, and I told her that my GP has me come in once a year, I was met with stunned silence and wide eyes. When asked what dose of my medication I began on and what I am on currently (it is the same despite worsening symptoms), I was met with the same wide-eyed stunned silence but now with added pen drop. When the endocrinologist did a physical examination of my thyroid, she audibly gasped at how enlarged it was. Remember that pain on the front of my throat? Of course, my enlarged thyroid is causing that pain! Now, because of the inflammation, our approach is to see what the blood tests say, but the endocrinologist gently warned me that we might need to do an ultrasound and consider the extent of the damage.
These simple acknowledgments that what I was experiencing was real and worth looking into were immediately validating and a huge relief. My A1C and insulin levels are being tested for the first time. I will have a full hormone panel for the first time. And with my weight gain, apparent symptoms of hypoglycemia, thyroid enlargement, and worsening menstrual symptoms, I would not be surprised if insulin resistance has become a big problem for me. I have read so much, had the ear of my dear friend (Diabetic, academic, and doing research in that area), and come to my conclusions. Still, I am looking forward to seeing the results and hearing someone tell me, in no uncertain terms, that it isn't all in my head and that we have a path forward. For the first time in what feels like forever, I have some measure of hope. And if not hope, then what?
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[1]
See âWhy Itâs Taking So Long by Johanna Hevda
NATURAL CAUSES by Barbara Ehrenreich
[2]
ADHD as Identity vs. ADHD as Disorder
[3]
Rethinking disability: the social model of disability and chronic disease
[4]
Unmasking Autism by Dr. Devon Price
[5]
Judgment under Uncertainty: Heuristics and Biases by Amos Tversky and Daniel Kahneman
[6]
See: Justice of Toren in the Imperial Radch Trilogy by Anne Leckie
[7]