Like most people, I’ve had to carry some burdens over the course of my life. But the most cumbersome weight I’ve been forced to carry came when the respected representatives of Western medicine asked me to bear the whole of their diagnostic shortcomings.
When you diagnosed me with Briquet’s syndrome, an antiquated variant of Somatic Symptom disorder, you asked me to carry the weight of your diagnostic ignorance. Liberating myself from the strain of that load has been a long and painful process. After all, the power disparities involved are profound. You’re a neurologist at a respected teaching hospital. I’m a chronically ill woman with a mere bachelor’s degree. I studied logic in college, not medicine.
Briquet’s syndrome, as described in the DSM IV, is alleged to primarily, perhaps even exclusively, affect females. Clinical features include complaints of headache, dysmenorrhea, and abdominal pain. A page from a Brown University website explains that patients with Briquet’s syndrome, “may have dizzy spells and pain in the chest. The heart may beat “wildly,” and attacks of dyspnea may occur. Patients experience pains in the arms and legs, the back, and in many joints. Vague and poorly localized abdominal pain is common; nausea may be intense, and bloating may be complained of bitterly. Constipation is common, diarrhea somewhat less so, and the patient often has a list of foods that cannot be eaten except at peril to the stomach and intestines…Common complaints include syncope [fainting], blurry vision, blindness, aphonia [inability to speak], globes hystericus [having a lump in one’s throat], deafness, paralysis, anesthesia, seizures, and varying degrees of urinary retention.”
Highlights of the Briquet’s diagnosis include a discussion of the distress it may cause the doctor who has the grave misfortune of encountering a patient with the dreaded condition, “The physician may approach the physical examination with a mixture of relief and weariness: relief because, finally, reliable data may be obtained, and weariness because lengthy and excruciatingly detailed examinations are required to follow up with the patient’s numerous complaints. Perhaps a few abnormalities may be found, but not that could reasonably account for the patient’s complaints. Rather than being relieved to hear that “nothing is wrong,” the patient may become angry, even resentful, and demand further tests…Eventually “fired” by the exasperated physician, the patient then moves on to the next.”
Any immunologist, hematologist, general practitioner, or most importantly—any patient familiar with Mast Cell Activation syndrome will recognize telltale signs of MCAS in the description of Briquet’s syndrome. Mast Cell Activation syndrome is a multi-system disease with inflammatory themes. Symptoms of MCAS can include cardiovascular symptoms such as tachycardia and bradycardia, chest pain, and presyncope which can consist of lightheadedness, muscular weakness and/or blurred vision. Depending on which mast cell mediators are most active, people with MCAS may also have flushing, itching, nausea, diarrhea, shortness of breath, bone pain, headache, cognitive dysfunction, depression, anxiety, brain fog, fatigue, and body aches. Mast cell activation can be associated with auditory abnormalities, such as tinnitus, hearing loss, and sensitivity to sound, eye problems including ocular discomfort and difficulty focusing, difficulty swallowing (which could be the globus hystericus described in the Briquet’s diagnosis), and bladder pain. Female sex hormones affect mast cell behavior, and complaints of flares with menstruation are not uncommon. MCAS can also cause neurological symptoms such as tics, tingling, paresthesia, slurred speech and seizure like events. Triggers can include foods, medications, hormones, and chemicals.
MCAS wasn’t named as a medical condition until 2007. I’d like to be able to excuse the harm you’ve done me by recognizing that you may have never heard of MCAS in your neurology practice. I know that Western medicine is hyper-specialized, so it’s possible you haven’t done any reading on the immune system since you graduated from medical school.
But despite the forgiveness I’d like to offer you, I can’t shake the ramifications of your misdiagnosis so easily. It sits heavily on my shoulders and it seeps into the consciousness of every other provider who sees it. When mast cell mediators attack and my throat begins to close, I’m in no position to convince the doctor in the emergency room that the Psychogenic disorder diagnosis glowing bright on the computer screen is an error. When I’m anaphylactic, I can’t explain the twisted dynamics of a medical industrial complex that systematically ignores the legitimate complaints of patients and creates psychiatric diagnoses to blame them for its inability to uncover the true reasons for their suffering.
And I shouldn’t have to. When you saw me as a patient, I was enlisting your help as a person with a medical degree who’d taken an oath to do no harm. I fulfilled my end of the bargain. I told the truth about my experience and I paid my bill for your services.
What you offered in return was a somatoform diagnosis that harms me every time I interact with another physician who is unfamiliar with Mast Cell Activation disorder. The same weight that crushes me propels your erroneous idea forward. The heft of your reputation prompted your colleagues at other facilities to offer me a diagnosis of Conversion/Functional Neurological disorder. A diagnosis that is Briquet’s contemporary cousin.
“Your symptoms are probably caused by unrecognized stress,” the doctor sighed with the tone of a disappointed father.
“I’m sorry, but that’s ludicrous. I still have symptoms after a full day meditation retreat if I eat the wrong foods or get exposed to certain chemicals. Do you have any affirmative evidence that this is psychogenic?” I countered.
“Well, um, no. It’s not like there’s a blood test or anything,” he replied after a pause. “But we have an intensive cognitive behavioral therapy program that may help you.”
“Do you really think your therapists can teach me something the Buddhist monks I’ve been learning from for years haven’t already taught me?” I asked as I lifted my purse and prepared to leave.
“Well, um, that’s what I can offer you,” he reiterated.
Nothing I said stopped him from noting in my medical record that he believed my symptoms were caused by unrecognized stress. Yet one more unprofessional opinion from a professional was added to the weight I carry.
I find the fortitude to carry this burden not only in my own cache of tenacity, but because I bolster my backbone from a collective pool of strength. Because you see, this isn’t just about what you’ve done to me. It’s about what you and your colleagues have done to us. The pool of strength where I find my fortitude isn’t pure. It’s transfused with the of pain and rage of hundreds of people just like me. Sick human beings who reached out to doctors like you with hope and in good faith. Sick human beings who’ve spent years being dismissed and discarded by people in your profession.
We ask you to expand your education and accept the validity of our experiences. We’re done carrying blame and shame on top of debilitating illness. We need our strength to help one another rise after being kicked down so many times.
Read these words and spread these thoughts among your fellow physicians. Lift this heavy burden from our shoulders.