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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 hematology or 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 syndrome. 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.

 

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Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.

17 thoughts on “An Open Letter to the Doctor Who Told Me It was All in My Head

  1. Yeah that was my neurologist a complete twat! Kept insisting I was stressed and had psychological problems despite several psychatrists and psychologists I was sent to saying I have no stress, emotional problems, nor any psychological or psychatric problems yet her kept saying it is a psychological problem and that I was stressed and depressed when he is not qualified to diagnose mental health issues with those who are qualified disagreeing with him. He clearly diagnosed me with FND just because he couldn’t diagnose anything from just my symptoms. He was bassically fobbing me off because he didnt want to do time consuming investigations on something that wasn’t part of his specialism in peripheral neuropathy.

    Fortunitly other doctors had my diagnosed to query FND meaning it it’s not confirmed diagnoses but just a maybe. Still I find neurologists are the worst doctors to visit of your condition isn’t easily diagnosed as they just want easy cases and fob off everyone else!

  2. Very well said! Your courage to respond to the laughable diagnoses with intelligent and pointed criticism not only helps you feel better but may help the next patient this doctor sees. I’ve tried to do the same with my providers and will continue to do so should I ever return to the Western medical system.

  3. Thank you. It’s beautifully written. It made me sob. This is my story, too. I’ve posted a link to this on my blog (I just started my public one). http://Www.thewalkingallergy.com. It seems that many of us who have been struggling for so long have hit ‘done’. I’ve heard patients say MCAS is a ‘controversial diagnosis’, or ‘unporoven’ or xyz….. Maybe it wasn’t well known in 2013 when I figured it out. But now we’re well past that. Nobody who knows anything about it says it doesn’t exist, or that it is anything other than a major revolution in understanding chronic illness. I spend SO much time dealing with my somatoform albatross- I’m assumed crazy until proven otherwise. The thing I don’t get is that there is only ONE downside to figuring this out for your patients. Your ego. It’s ruining people’s lives, increasing morbidity and mortality, really sick Masties cost all health systems a ton. And the initial treatments are quite effective, easy, and cheap. It’s win win for patients and physicians. Even big pharma could make a mint- the main mast cell stabilizer on the market came out in the 60’s… There’s a LOT of room for improvement. Ego alone derails it all.

    As we each speak up, we speak together. We are not alone. We want to live, and to be as functional as we can. We don’t want to spend our precious energy on fighting, but we will if we are left no other choice. And enough of us have taken philosophy to run circles around any M-Dieties in our path. 😉

  4. Thanks for sharing. I’m sorry you too have had the same experience but I’m delighted that you’re speaking up and blogging too. Let’s raise our voices Mastie sister!

  5. Thank you for this Twila. I have begun reaching out to psychiatrized victims of “medical mimics and medically kidnapped people to ask them if they were misdiagnosed as
    “mentally ill” by the fraudulent DSM because dr’s were to ignorant, lazy, unethical or greedy to address the differentials, start testing and withhold dx until they found one. The DSM states that symptoms better described as a real medical disease IE: Thyroid disease or Brain injury cannot be used towards a “mental illness” dx. This proves that they know “mental illness” are not real diseases and that they are dx’ing people anyway, which is insurance fraud.
    People I ask have often been labeled and harmed as well. It is, as you suggest, an ever-growing body of people medically harmed.

    1. You make a good point. I think DSM diagnoses are simply a transitional, and unfortunately very harmful, step in the evolution of medicine. It’s my hope they’ll disappear once legitimate biologically based reasons for behavior can be better identified in the cases where such biological causes exist. In other cases DSM labeled behaviors should disappear because they’re nothing more than stigmatizing words for normal human responses to stressful events.

  6. I’ve had xrays that indicate I have scoliosis and I can literally feel and see the misalignment of my bones in my ribs, chest and shoulder yet whenever I try to seek help I encounter doctors that assume I’m a doctor shopper, doctors that tell me there is nothing to indicate that I’m actually experiencing the chronic pain and discomfort that is constant in my life, doctors which shrug off my concerns before even trying to diagnose what is wrong with my body. I recently developed a horrible candida infestation in my throat which spread to my scalp, ear canals, genitals and even to my partner. It took me 6 months to finally get diagnosed by a simple swab test. Throughout that time I had 5 GP’s, 2 ENT specialists and 2 doctors at hospital emergency rooms tell me it was globus syndrome and that the choking feeling and other symptoms I was experiencing constantly were just in my head and a result of anxiety which I didn’t even have. Due to this I actually developed anxiety and stress and because of the rate that the symptoms were progressively getting worse I became convinced I would die within the next 2 years. I had doctors scoff at me for being so worried yet once I got my diagnoses I found out that if I left the candida untreated I would have likely died in the next 2 years. I’ve heard so many different views from different doctors and each doctor I see tries to tell me that they alone are correct about my symptoms and that any doctor who says otherwise must be wrong. I’m so fed up with the medical system and sometimes want to strangle one of the doctors who misdiagnosed me while yelling “It’s all in your head, I’m not hurting you, you are just anxious”

    1. That’s the absurdity of it, isn’t it? How being told your legitimate complaints are just anxiety can actually cause terrible anxiety. I’m glad you finally got an answer regarding the candida. I hope you get some resolution for your pain. Thanks for sharing. I hope that if enough of us speak up about the worst case scenarios of having our complaints dismissed then more doctors might become tempted to take us more seriously. Best wishes for healing to you.

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