Middle-aged doctor pointing above his head towards blank white copyspace while looking at the camera with an intent expression

An Open Letter to the Doctor Who Told Me It was All in My Head

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.

Photo of woman in white tank top holding right hand over right ear with expression of pain on her face.

Should We Blame it on the Mast Cells? Pt. 1 Hyperacusis

Hyperacusis is abnormal sensitivity to everyday sound. That may seem like a benign description, but if you live with hyperacusis, you know that the pain associated with it can be debilitating. Auditory environments that are tolerated by many people, such as restaurants and shopping centers, can become off-limits to people with hyperacusis. Some people are so greatly affected by the condition that they need to wear ear protection even within their own homes.

Audiologists sometimes suggest pink noise therapy as a treatment for hyperacusis. Pink noise is combines a certain ratio of sound frequencies. The goal of pink noise therapy is to retrain the auditory system’s ability to tolerate sound. Some people with hyperacusis report success with pink noise therapy, others contend it had no effect on their condition. Still others say that exposure to pink noise made their condition worse or exacerbated other auditory problems, like tinnitus.

Some physicians have recommended benzodiazepines for their patients with hyperacusis. The rationale behind this is usually either that hyperacusis is a psychological condition that may be relieved if a person reduces their anxiety or that hyperacusis creates anxiety that can be relieved with medication. I very much dislike it when doctors assume that medical conditions that aren’t well understood must be psychogenic. It’s very poor reasoning that leads to that conclusion. If you only have those two choices to choose among, it’s a more solid proposition that living with a poorly understood condition could cause anxiety. Regardless of the thought process behind the prescribing, some people with hyperacusis report improvement with benzodiazepines. Does that imply that their hyperacusis was in fact caused by anxiety?

Not necessarily.

Dr. Lawrence Afrin, well-known mast cell pioneer, dedicated an entire chapter of his book, Never Bet Against Occam, to otological occurrences in patients with Mast Cell Activation disorder. He notes that he has seen patients with Mast Cell Activation disorder present with auditory conditions including tinnitus, otitis externa, hearing loss, and hyperacusis.

 

 

Benzodiazepines can have mast cell stabilizing functions. Is that the reason some people with hyperacusis respond so well to them? I don’t know, but it’s certainly something to think about. Conversely, some people say their hyperacusis onset while taking a benzodiazepine for another condition. The relationship between that class of drugs and the auditory system certainly seems to merit more investigation.

I’ve experienced quite a bit of improvement to my hyperacusis since starting a low histamine diet, adding in anti-inflammatory turmeric supplements, and taking Benadryl more frequently. Antihistamines can stabilize mast cells and some research suggests mast cells can play a role in some inflammatory processes. I’d love to know if other people with hyperacusis have gotten any degree of relief from antihistamines, anti-inflammatories, or any other types of treatment. Please comment below about your experience.

Keep in mind, I’m not a doctor, I’m a thinking patient. I ask questions to spark examination. Please consult with a trusted healthcare provider or pharmacist before adding or changing medications or supplements.

Thanks for reading. Happy healing to all of you.

Notes and disclosure: References can be found by clicking on the hyperlinks. My discussion of general feedback from people with hyperacusis is based on reports people have given me directly and patient feedback in public hyperacusis discussion forums. I know that anecdote isn’t a substitute for research, but I think anecdote is very important. Enough reports from enough people might spur researchers to investigate and quantify our experiences.

I do participate in the Amazon Associates program so purchases made through the Amazon links in my posts can earn me a small portion of the purchase price, without adding anything to your cost for a product.

You can contact me at athinkingpatient@gmail.com.

Piece of beef on cutting board with sliced tomato. Sliced onion and whole radishes in background.

Let’s Dump Sanctimoniousness Into the Compost Pile

I’ve always known that my food choices mattered. I’ve never doubted that the fuel I put in my body played a huge role in my health. I’d read a lot about nutrition, and was confident I was making the right choices. So, why was I so sick and getting sicker every day?

For years I’d been a vegetarian. My choice of a plant based diet was based on multiple points. I care about the environment, and I’d read that raising animals for food is more land and waste intensive than raising plants. I think slaughterhouses are horror shows that neither animals nor human employees should ever have to experience. I’d read piles of books by authors like Dr. Neal Barnard, and each volume reinforced the healthfulness of my choice to avoid consuming foods from animal sources.

From my late teens through my early thirties, I’d been very healthy while following a vegetarian diet. Why wasn’t it working anymore?

Earlier this year I started documenting how my brain and body responded to meals. I’d noticed that each morning, fifteen to twenty minutes after breakfast, a flurry of angry thoughts would race through my mind. Breakfast was always one of three menus — steel-cut oatmeal and blueberries, raisin bran with almond milk, or yogurt and toast. My impulse was to sit and counter the angry thoughts with meditation, but the gastrointestinal agony that rose up each day with the anger made sitting for meditation anywhere other than on the toilet impossible. I have no doubt that if I’d gone to a psychiatrist I would have been diagnosed with bipolar disorder and offered a bottle full of pills.

Two years prior, I’d realized I could no longer eat soy products. After enjoying a plate of tofu with black bean sauce, a spicy favorite from a local restaurant, I’d become so sick with flushing, sweating, and GI upset that I’d had to stay in bed for three days to recover. I experimented and documented for several weeks, and determined that soy was definitely a causative agent for these episodes. I cut it out of my diet.

I asked one of the many immunologists I visited what I should be eating. He told me to read The Calorie Myth by Jonathan Bailor. The doctor explained it was the most evidence-backed book on nutrition in print. I read the book, and despite the multiple references to research it delivered, I remained skeptical. The book returned again and again to the value of high quality animal protein, and the books I’d read previously, as well as my mental attachment to a vegetarian lifestyle, made me resistant to change. When I applied a bit more analysis however, I started to see flaws in the reasoning and conclusions drawn in most of the plant based diet books that had previously influenced my decisions.

Most fundamentally, I was too sick to cling to something that wasn’t working. I bought a brand-new food journal and went to work. I was surprised when the foods I’d believed were beneficial, or at least benign, started to stand out as offenders. Legumes like chickpeas, black beans, kidney beans, and lentils always made me sick. Spinach did the same. Grains, including bread (I experimented regular, ancient grain, and gluten free), pasta (also with or without gluten), and rice all left me ill. Flushing, confusion itching, nausea, fatigue, swelling and anxiety onset after eating each one of these foods. Pesticides weren’t a factor. Everything I ate was Certified Naturally Grown or Organic. Cutting out all those items and maintaining a balanced vegetarian diet wasn’t possible.

What did these foods have in common? Most of them are high in histamines or are histamine liberators, and my body does not like histamines. Many of the offending foods quickly turn into simple or complex sugars during the digestive process, and it seemed I could no longer tolerate sugar.

Faced with a stack of experiential evidence, I started eating a Paleo-style diet that I’d once viewed with eyes full of doubt. I started to fill my breakfast plate with eggs and turkey bacon and my dinner plate with organic, free range animals that had never seen a feedlot or a slaughterhouse, lettuce splashed with olive oil and seeds, and heaping piles of roasted beets, onions, and kohlrabi. Since I’ve made that transition, I’ve gotten a lot of relief from confusion and GI upset. Episodes of excessive pressure in my head happen less frequently, and I no longer suffer from flushing or bouts of rage after each meal.

I had to be open to moving away from something I deeply believed in so that I could heal. But my experience shouldn’t be taken as evidence that eating animal protein is the only way to be healthy. There are many other people who have cured their diseases by eating vegetarian or vegan diets. There are vegan competitive bodybuilders and top-notch vegetarian athletes. When I was 32-years-old and running 10k races, I was one of those people. But after exposure to a lot of hurtful medical modalities, my body changed. That diet is no longer right for me. Perhaps someday I’ll be able to return to it—it’s far less expensive and offers a greater variety of flavors—but that day is not today.

For every diet, form of exercise, or medical treatment, there will be groups of people for whom certain advice is ill suited. At a time when research into genetics is pinpointing little distinctions that make big differences in our metabolism and predisposition to certain diseases, one size fits all is a very bad approach to healing sick human beings.

I was never the type of vegetarian who harassed meat eaters. Conversely, I was usually the one being harassed with constant offers of bacon. But now that I’ve life changing transition to a Paleo style of eating, self-righteous vegetarians and vegans seem to be attacking me from all corners. I’d like to ask that people be a bit less rigid in their ideologies and far less judgmental of one another’s choices. It isn’t helpful to ridicule or shame people who have been harmed by things that helped you.

The more all of our voices are heard, the more progress we make towards a practice of healing that looks at us as individuals rather than a monolithic mass of faceless suffering.

You can contact me at athinkingpatient@gmail.com.

 

Childproof tops of many prescription bottle of medication

My Thoughts on World Benzodiazepine Awareness Day

July 11th is World Benzodiazepine Awareness Day.

For me, this is a reminder that medicine is not a one-size-fits-all proposition. During the years I struggled with Premenstrual Dysphoric disorder and anxiety from undiagnosed autism, I had benzos handed to me like candy. Not like candy from a friend who wants to share, but more like candy from the guy in the van who wants to abduct you.

I complained to the doctors who prescribed them that they made me feel sad. They made me feel sick and slow.

“No, your mental illness makes you depressed, not the medications! You are sick because you do not take these medications as you are instructed to take them,” they’d insist as they pressed fresh prescriptions into my palm.

I look back with gratitude to my younger self for my non-compliance, which likely saved me from a prolonged and devastating withdrawal, or even suicide. I hated the way the benzos made me feel, so I never took them as prescribed. I was the object of many stern lectures from psychiatrists for my refusal to take them on a daily basis. Interestingly, the same doctors who lectured me for refusing to take my meds, were the same doctors who failed to caution me about the addictiveness of benzos, or the agony some people experience when trying to withdraw from those medications.

But this is only one part of the story. During the years I took drugs like lorazepam intermittently, which was a handful of times a month, I had very few of the near anaphylactic allergic reactions I’m have more often today.

Why? Because benzodiazepines are mast cell stabilizers. The very drugs that made me  depressed enough to have suicidal thoughts may have been saving me from life-threatening allergic responses.

I can never choose benzos to treat my mast cell disorder, but I support the informed decision of other mast cell patients to do so. The issue isn’t about inherent properties of a drug. It’s about the importance of providers being educated on how drugs can affect different people with different conditions, metabolic rates, and genetic mutations, and using that education to cautiously and appropriately prescribe. It’s about physicians fully educating patients on potential benefits and risks. And it’s about physicians listening and believing when their patients report adverse side effects.

As consumers of health care we should extend the same courtesy to one another. We should be compassionate and open-minded enough to recognize that a modality that is hurtful to some of us should remain available, because it may be the only effective treatment for another person. I know people with devastating multi-system mast cell disease whose lives were saved by the same benzodiazepines that have killed other human beings. We need to fight for education and understanding, not eradication.

Open book with light shining down and bright stars sprinkled in air.

Excerpt from My Memoir, The Big Book of Unicorn Breed Descriptions

Many of you have reached out and asked what medical treatments in 2014 led to the brain changes I experienced. I’ve written a book-length memoir about my experiences that has not yet been published. This is an excerpt from my manuscript. It portrays one scene from a series of chemically induced brain changes I survived three years ago. The format of the book is me sharing each scene with a professor of psychology. The italicized paragraphs represent questions and comments from the professor.

 

I sat in the waiting area of the salon. I’d always hated getting my hair cut, but I’d known my hairdresser Shawna for years, and our relationship made the process tolerable.

The salon’s speakers blasted music that blazed into my brain. The high-pitched instruments and vocals were like lightning strikes to my cerebral cortex.

I saw movement out of the corner of my eye. Shawna was waving at me. “Blah-as-blah go-blah-on,” she yelled. “You blah-oo-blah like a blah-eaker.”

“Huh?” I stared at her mouth as she repeated the sentence.

“You’re doing that chewing thing like a tweaker. You know, a meth head?”

My lower jaw was rotating. I couldn’t make it stop. Tears welled up in my eyes as I sorted through her words. I sat silently as she cut my hair, watching my jaw in the mirror as it performed its circumambulations.

“You’ve got some bald patches, girl. Like somebody on chemo. I’ll try to cover ’em up,” Shawna said. I squinted and focused on the shape of her lips in the mirror to aid my understanding of her words. I shrugged in return, because my words wouldn’t form.

Later that evening I went out with my husband Alec to buy shoes. When I opened my mouth to speak to the salesman, the words that came out were different from the words I wanted to speak. Each word was followed by  nonsense words or a series of random sounds.

“These shoes, shoes, foots, um, bay! Shoes, meep meep!”

I finished the transaction by writing on a notepad and showing it to the ever-patient salesman. Even that was hard, because I struggled to find the correct spellings for the words I needed to use. Then I fought to fit the words onto the page. Alec drove us home. I sat in the passenger seat and waited for my speech to return.

I wasn’t scheduled to see a neurologist for another week. But Alec thought it was a bad idea to wait for the appointment when he realized I could no longer speak at all. He drove me to Local Hospital.

On the evening of August 13, 2014, I arrived at the emergency room. The staff rushed me back for treatment because of my stroke-like symptoms. My speech was gone. Both of my arms felt numb. My jaw wouldn’t stop moving.

A nurse with long, bright pink acrylic nails looked down at me as I lay on the hospital bed, “What’s happening hun?” she asked. I stared at the floral designs on her fingertips. I struggled to understand her words, then tried to answer her question. “I-uh-uh-I-uh,” I stammered out stunted sounds, then took my notepad from my purse and tried to write.

“Do you use sign language?” she asked. “We can get you an interpreter.”

“No!” Alec yelled. “That’s why we’re here! She’s not deaf. She knows how to speak, but she can’t right now.”

“Oh, she sounded deaf—” said the nurse. She tapped her plastic claws on a clipboard and the sound echoed in my head.

“Her speech has been getting worse for weeks, and now it’s gone! I think it’s the amitriptyline!” Alec insisted.

A young doctor, a white man with a hard face, entered the room.

“What’s going on?” he asked. Despite his unaccented Midwestern English, he was hard to understand. I struggled to hear him over the beeping instruments around me.

I scribbled on my notepad.

“NO,” he shouted. “I WANT YOU TO TELL ME! USE YOUR WORDS!”

Tears ran down my face. I opened my mouth and some sounds came out. “Muh-muh-meep! Bay!” There were bright letters dancing in my field of vision. There was a loud choir in my left ear and a bee-like buzzing in my right ear.

A man in scrubs pushed me down the hall for a CT scan, and then wheeled back to the original room.

Young doctor marched in again. He shook a piece of paper that he held in his hand. “Your CT was normal! This cannot be the amitriptyline,” he said. “I’ve never seen a drug reaction like this. This is conversion disorder! I saw your psychiatric history! You’re converting your stress into physical symptoms.”

His expression was that of a man who’d just found dog shit on his shoe.

“I’m going to give you some Ativan. Follow up with your psychiatrist,” He turned and walked briskly from the room.

I tried to say I didn’t want the Ativan. But I couldn’t speak, and no one was listening. Acrylic nurse gave me Ativan by IV and sent me to another room where a woman demanded my $100.00 copay. After I scribbled my deteriorating signature on the receipt, she waved me in the direction of an exit.

What’s the difference in your loss of speech in this time period vs. how you hadn’t been able to talk before in meetings or during therapy?

The difference is before, I could form thoughts and words in my mind, but I was scared to speak, or couldn’t figure out when to speak. It was an anxiety and timing thing. And it only happened in certain situations. I’ve always been able to communicate very well when I’m one on one with the few people close to me. This was different because I could neither form thoughts, nor get the words out. And it had nothing to do with being scared or anxious. I couldn’t even have a conversation with Alec.

Two doctors who knew you very well recognized you were having a reaction to one or more of the drugs you’d been prescribed. But when you went to the ER because you’d become nonverbal, you were told by a doctor who didn’t know you that it was all in your head.

Yeah, pretty much.

Do you think if you didn’t have a psych history the ER doctor would’ve been more objective?

Hell yeah, I do. I’m not saying he would have correctly diagnosed me. He wouldn’t have. He didn’t have the training or the resources. But he probably wouldn’t have treated me like dog shit. Not without the psych history.

But his hubris! Astonishing, isn’t it? I mean, he said, “I’ve never seen a drug reaction like this.” And that somehow translated to therefore I couldn’t be having a drug reaction. And that’s just crazy. Because if he, this little boy doctor, in this little Kansas hospital, hasn’t seen something—then it can’t exist? Are you for real? Do you think he had a clue that Lupron has a known side effect of pituitary apoplexy? Do you think he knew that amitriptyline can cause something called neuroleptic malignant syndrome? Do you think he had a comprehensive pharmaceutical side effect database in his teeny little head? Do you think he’d ever heard of Mast Cell Activation disorder, which makes unusual and debilitating side effects the norm? Of course not!

But even though he didn’t have knowledge, he had power. The power to brand my medical records with the ultimate crazy bitch diagnosis of conversion disorder. A diagnosis that will follow me into every doctor’s appointment I have for the rest of my life once electronic medical records interoperability becomes a reality. You know, it’s one thing to make a diagnostic mistake based on inadequate information—but it’s an entirely different thing to then blame the patient for your mistake, treat them like shit for it, and destroy their reputation through their medical record.

This was a turning point. It’s when I realized that biases are more dangerous than I’d ever imagined. Because once enough authorities canonize a bias as truth, you’re screwed.

Elaborate. What do you mean?

Huh? What do I mean? I’ll try to explain. It’s a manipulation that seems logical on the face of it, if you don’t know what to look for. You know what a syllogism is right? No? Well, bear with me. It’s not that complicated. A syllogism is a form of reasoning where you have a major premise, a minor premise, and a conclusion. That’s the bare bones basics, and that’s all you need to know right now. I’m gonna use a particular syllogism called Modus Felapton here.

You said this particular syllogism? How many syllogisms are there?

Huh? How many? 24 valid ones, but like 256 syllogisms total. Jesus Christ, stop interrupting me! You want me to get all circus sideshow autistic and name all the syllogisms? No thank you.

Anyway, one syllogism that has a special appeal to doctors goes like this: No mentally ill person is worthy of decent treatment from me. All mentally ill people are without easily detectible organic causes for their unconventional behavior. Some mentally ill people exist. Therefore, some people without easily detectible organic causes for their behavior are not worthy of decent treatment from me.

It’s easy for an emotionally motivated, egotistical doctor to see this syllogism as valid. I mean, it sounds good, right? Of course, once you adopt this line of thinking, all hope for offering fair treatment to a patient who presents as mentally ill is gone.

Now, there are lot of things wrong with that syllogism. But do you think that most emotionally motivated egomaniacs will see the problems? I don’t. I’ll point out just a few issues. First, if any of your premises are false, the whole thing falls apart. And we have reason to question both premises. Do you see the odd concept here, the concept of a different character? No?

Worthy of decent treatment, that’s the concept, and it’s a real tricky one. It probably doesn’t belong here in this format, but would you have recognized that if I hadn’t told you? Do you understand why worthy of decent treatment is different? Why it doesn’t fit in? Of course, you don’t, because you’re more emotional than you are rational. But I see instantly that the concepts worthy and decent are different from the types of concepts you usually see in valid syllogisms. They’re very vague, and rest on a lot of moral assumptions.

And then there’s what’s known as the problem of the empty class, which leads to what’s known as an existential fallacy. You’re lost? Hold on, chill out, this isn’t hard. All the empty class means is that you’re referring to something that isn’t there. The classic example is saying all unicorns have one horn. There are no unicorns, so it doesn’t matter what qualities, like number of horns, they have. The unicorn class is empty.

What if there are no mentally ill people? What if mental illness is an empty class? I mean, unless you’re ready to explain how different manifestations of behaviors, which can vary from time period to time period, and circumstance to circumstance, are enduring enough to be considered qualities, like the quality of redness or the quality of having a horn—or even like the quality of having heart disease or diabetes, then your DSM is starting to look like the Big Book of Unicorn Breed Descriptions. Or is it? Am I trying to trick you? Can you even tell? Do you feel manipulated? Screwed and confused? That’s how I felt when I read my medical records. Like I’ve been tricked. Like the doctors had used something that they were supposed to have professional mastery of, and turned around and fucked me with it.

So back to the syllogism. I mean, since you can’t identify the problems in the example, you might be at risk for believing something that looks valid, but isn’t valid at all. There are big problems with that example, but the logical form is actually legit.

There I was with unconventional behavior and no easily detectable organic cause. The ER doctor concluded I was mentally ill and unworthy of decent treatment.

 

 

The word lies in a dictionary, highlighted in pink.

The Notion of Historical Neurodiversity Hurts Autistics

I’m no stranger to lies and conditional acceptance. As a child, my mother insisted my brown skin was white like hers. When I asked her why I saw a brown face in the mirror, she spun stunning tales of a Cherokee grandfather and a mysterious group of forebears called the Black Irish.

Thirty some years later, when I finally gazed upon the brown face of my African-American father, I felt liberated. Vindicated.

I watch my history repeat itself as I interact with adult autistics. After I blogged about When Modern Medicine Made Me More Autistic, I gingerly shared the link to my story with my local Autistic Self-Advocacy Network (ASAN) chapter. I feared rejection and judgment, because my story flies in the face of popular autistic assertions that autism is an exclusively congenital state that exists and persists independently of harm caused by pharmaceuticals or environmental agents.

The rejection and judgment I feared didn’t materialize from my local chapter, but I took some heat from a few autistics around the world. With this post, I’m going to liberate myself from fear of rejection and conditional acceptance and make my position clear.

The notion of historical neurodiversity hurts autistics.

The figures in history whose behaviors allegedly corresponded to what may now loosely be within the bounds of an autism diagnosis—men like Henry Cavendish, Isaac Newton, and Charles Darwin, don’t much resemble the autistics we see today.

These historical figures were reported to be introverted and solitary—their intellects logical and brilliant. They don’t look a bit like today’s “level 2 and 3” autistics who sit glued to screens, earbuds planted firmly in ears because the slightest noise will trigger a meltdown.

Was there a cadre of autistic lesser characters who didn’t make it into the history books? A quiet contingent of autistics who sat rocking in living rooms and classrooms with the same frequency as young autistics today? Any honest person over age forty will answer that question with a resounding no. Any school teacher who has been teaching for over twenty years will say absolutely not.

I’m only 41-years-old, but I can assure you I was the only child with blatantly autistic behaviors at any of the five densely populated urban and suburban high schools I attended. My behavior was so far outside of the norm that staff had no idea what to make of me. They’d never seen a child who acted like me before. I’d become so overwhelmed by my surroundings that I’d opt to sit in hallways rather than enter my assigned classrooms. I’d likewise refuse to enter the cavernous and intimidating cafeterias. In the 80s and 90s, I was the only child like that out of hundreds of children.

At home, I’d sit and throw light bulbs and glassware against the wall of my bedroom. I’d lapse into a meltdown at the least disruption to my environment. At the home of my only friend, I’d hide away upstairs, face buried in a book, because the play of other children downstairs overwhelmed me.

As the years passed, I learned to mask and manage these behaviors, but my act was short-lived. In 2014, when I was in my late thirties, I experienced a series of pharmaceutically induced brain changes. After several adverse reactions to a host of drugs, all of the hallmarks of my autistic behaviors were exacerbated. My sensitivity to sound reached a level of intensity I could never have imagined possible. A disconnect formed between my mental conceptualization of words and my brain and my mouth’s abilities to create speech. Words I wanted to say were replaced by involuntary and repetitive vocalizations.

Meep! Bay! Yes, then now! Yes, then now! Yes, then now! Yep, yep, yep! Say, then now! Meep!

Words and phrases fell from my lips unbidden and uncontrolled. I still spout nonsense at times of sensory overload, exhaustion, or after eating foods I don’t tolerate well. I never made such sounds before 2014.

After my pharmaceutically induced injury, my avoidance of people transformed from a preference to a mandate, and my challenges with eye contact regressed to level I hadn’t experienced since elementary school. Suddenly I had an impulse to bang my head against the wall, another regression to behaviors I had as a young child.

So, do I believe that adverse reactions to pharmaceutical agents can cause or exacerbate symptoms of the condition we currently call autism? I absolutely do. I’ve lived through it. My exacerbated autism was not a naturally neurodiverse state. It was brain damage. I did not consent to it, and while I now accept it, I would never have chosen it.

Prior to my injury, I lived in a place I’ll call the autistic sweet spot, where the strengths granted me by my condition, such as my hyper rational thought processes, overshadowed my primarily social liabilities. After my injury the balance shifted, and my autism became anything but sweet.

My damaged state resembles the types of autism we’re seeing more of today. After my neuropsychiatric injury, I became more anxious and panicky. My lifelong sensitivities—to sound, motion, and light—transformed from manageable to debilitating.

The conditions that made my neuropsychiatric injury possible are genetic mutations that prevented my body from metabolizing several medications, changes to my gut microbes, and an immune condition called Mast Cell Activation syndrome.

If autistics want to bury their heads in the sands of denialism about the etiology of the types of autism that are skyrocketing today, it’s at their own peril. Today, young Aspergerian autistics who personify life in the autistic sweet spot dominate conversations about autism. They celebrate their neurological differences, which they seem to believe exist as entities distinct from the other medical conditions they often live with.

I wonder what these young people will look like at my age—after short lifetimes of gulping down toxic drugs for ADHD, mental illnesses, gastrointestinal disturbances, hormonal imbalances, and sleep disorders they somehow believe have no relationship to their distinct neurological status.

And that says nothing of the autistics who are already like me. The nonverbal, intermittently verbal, or involuntarily vocalizing autistics. Autistics with bodies full of debilitating co-morbidities. Our perspectives have already been pushed to the margins by prominent and successful autistics who romanticize autism, blissfully ignorant of the challenges faced by those of us who are more profoundly disabled.

The autistics who dominate the conversation don’t talk about bladder dysfunction and incontinence. They don’t talk about irritable bowel syndrome and accidents. They can leave their homes without 32 decibel noise reduction rating ear protection. They can live independently, without fear of becoming lost in their own neighborhoods on days when they face profound confusion.

Some rest their high minds behind blog posts that deny the experiences of those who have lived through or watched loved ones live through chemically induced neuropsychiatric injuries. Others sit happily in their parents’ basements, punching controls on PlayStations. They cheer their lack of maturity as a mark of distinction, but avoid discussing what might happen to them when their parents pass away, or the stress their parents might endure when considering that question.

I reject being told that black is white, and that my lived experience is something other than what I see in the mirror. Our modern, toxic environment is hurting those of us with autoimmune mediated autism, and it’s creating a variety of autism we’ve never seen before.

Autistics should be marching in the streets demanding justice and compensation for our injuries, but instead, we’re creating and defending a myth of historical neurodiversity. What a coup for pharmaceutical companies and Monsanto that those who have been most harmed by their wares reject the notion that we’re damaged.

Light always shines through lies, and myths always crumble and shatter. I’ve broken the trauma bond that once led me to buy into lies to gain conditional acceptance.

Today’s autism is not yesterday’s autism.

I believe I was born autistic, and autism as I originally experienced it was sweet. I don’t want to be neurotypical, but I want to live life without a crushing disability. I’m no longer in that autistic sweet spot. I’m injured, and I won’t rest until the truth about pharmaceutically induced neuropsychiatric injuries is told.

Illustration of a light brown human head. The top of the head is open and reveals a maze. A skeleton key is approaching the left side of the head, where an illuminated keyhole shines.

The Power of Patience and Openness

A great trap of the human ego is to substitute ignorance and overconfidence for an opportunity to learn. I’ve watched people fall into this trap when I try to engage with them, and I’ve seen myself fall into the trap as well.

One afternoon I was in a crowded store. I pushed my earplugs deeper into my ears so that I could avoid confusion, and leaned forward as I strained to understand the saleswoman’s voice over both the loud music and the distortion my earplugs created.

“My wife has a hearing disability, she—” my husband started to offer an explanation of my hyperacusis and auditory processing disorder, but the saleswoman cut him off.

“Oh, I totally understand. I was a schoolteacher for years before this. I had a couple of deaf kids in my classroom,” she nodded and smiled. I stared hard at her lips in an effort to augment my understanding. Sensory overload had rendered me nonverbal.

“No, what my wife has is—” he tried again.

“Don’t worry! I totally get it!” the saleswoman exclaimed.

About a year later I went to a yoga studio. My arrival at the class was a very big deal. I hadn’t done any yoga since the brain changes I’d had in 2014 had exacerbated both my auditory and visual challenges. I thought I’d open the conversation about my limitations by referring to one of my better known diagnoses.

“Hi. This is my first time here, and I just wanted to make you aware that I have some disabilities. Some of my mannerisms might seem a bit odd. You see, I’m autistic and—“

“Oh, don’t you worry! I’ve studied autism. I completely get it. No worries about how you come off!”

I become disoriented when people interrupt me, so I stopped speaking. I’d wanted to explain that I need to rely quite a bit on visual cues, but that those could fail me too. I’d wanted to say that I might learn a bit more slowly than the rest of the students, but if I struggled it would be best to let me continue my efforts to imitate the poses in silence and by demonstration, rather than verbally coaching me. But I closed my mouth and didn’t say anything.

It can be hard to resist the temptation to believe we fully understand the experiences of another human being, simply because we have a passing familiarity with the first words they use to describe their journey through this life. But overconfidence in the breadth of our empathy can be a big obstacle to true understanding.

Someone once told me they could complete the sentences of others with near perfect accuracy. They substituted a belief in their possession of a communication superpower for authentic listening. This person then proceeded to transform most of what I said to them into something vastly different from intended meaning. I’d rarely encountered such a deep and profound misunderstanding.

Language can put us at a disadvantage. Humans have to agree to at least a working definition of words to get anything done. But it’s unwise to rely on our previous relationships of a few words when we’re trying to get to know another human being. It’s a far better idea to hear one another out.

Even when discussing non-human topics, we can miss a lot by glossing over details offered to us. You may tell me you have a painting of a black and white dog. If I become eager and cut you off, proclaiming that I too have a watercolor of a husky racing across the Arctic, I may miss the beauty of your story about the oil painting of your grandmother’s Boston Terrier. A dog that saved her life by waking her when her house caught fire.

Listen. Learn. Understand. You never know what someone might teach you.

Black woman with curly hair covering ears with her hands, over a green background

My Top 7 Ear Protection Favorites for Sound Sensitivity

I’ve had a few folks reach out and ask me what kind of ear protection I prefer, so I thought I’d write a blog about it.

My relationship with sound is complicated. Certain high pitched sounds actually cause me pain. Any sound disrupts my concentration, but long periods of exposure to any sound, or short periods of exposure to very loud or complex sounds can be so disconcerting that I lose the ability to think and speak.

I like to preserve my ability to think, so I’ve experimented with lots of products to find the best one to help me navigate different auditory scenarios.

These are my top picks.

1. For light protection I like Etymotics brand High Fidelity Earplugs ER 20XS. They lower sound by about 20 decibels, which I find to be a perfect reduction in environments such as parks or retail environments without music. The clear, rounded stem peeks out subtly, so not a lot of attention is drawn to the ear.

2. For medium protection I like Radians Custom Molded Earplugs. They have a 26 dB noise reduction rating (NRR). The silicone plugs mold to fit your ear. Because of the custom molding, I’ve found them to be among the most comfortable plugs I’ve used. I wear them in the shower on days when I’m particularly sensitive, or when I’m traveling and need to block out the sound of a fan in a hotel bathroom that comes on automatically with the light.

3. For heavier protection, I reach for Mack’s Dreamgirl soft foam earplugs. They help block the sound of low volume music or urban traffic noise. I can’t imagine sleeping without them. They have a hefty 30 dB NRR but don’t sacrifice comfort like bulkier plugs in the same NRR range. If your ear canal is larger, you may want to opt for a different Mack’s model.

I’ve tried my share of earmuffs too and the brand I’m happiest with is 3M. Their Peltor series muffs offer comfortable protection for a range of auditory situations.

I’m no longer self-conscious about protecting my senses. I consider wearing hearing protection in public to be analogous to using a mobility aid. I can’t really get around well without it, so it isn’t really anything to be ashamed of.

4. With a NRR of 21 dB, I like the 3M Optime 95 for short duration or less demanding sensory challenges. I keep a pair on hand in my car for the times I’m stuck at a stoplight next to a kid with a booming radio or when a fire truck or ambulance races past me.

5. When the volume goes up, I reach for my 24 dB NRR muffs. Worn over the Mack’s Dreamgirl plugs, these can get me past a whistling locomotive with minimal disruption to my train of thought.

6. If you find that your town has been invaded by a motorcycle rally, then it’s time to grab a pair of 3M Peltor X5A muffs. With a noise reduction rating of 31 dB, they’re the most powerful muffs in my collection. They are a bit heavy, but are still comfortable enough to wear for a few hours at a time.

The customer service team at 3M is top-notch too. I had a less than fun encounter with the TSA staff at my local airport when I attempted to wear my yellow 24 dB muffs though security. I explained they were a medical device and the TSA screener requested I remove them and run my hands over them before returning them to my head. I complied, and my hands were swabbed for explosives. My eyes sure got wide when I saw the screen flash detected. Seconds later I was pulled aside for a private pat down. Once I demonstrated I was not in possession of anything threatening, I was allowed to board, but the incident worried me. I emailed 3M to find out what had caused the alert.

I received the following reply explaining the reason for the event.

“Our Peltor Earmuffs are manufactured in a facility with many different 3M products and we can confirm that there are not any explosives manufactured in that location. I did find some information that indicates that the TSA’s reader flags glycerin as a component in explosives.  Our earmuffs are filled with glycerin to create the comfort fit around the ears, the glycerin is non-hazardous but is a chemical building block of some explosives.  Please let me know if you have any additional questions or concerns.”

I thought 3Ms commitment to seeking out an answer to my rather unusual question about their product was pretty amazing.

7. The most awesome piece of equipment in my repertoire of anti-auditory assault tools are my Bose QuietComfort 20. If you can fit them into your budget, they’re worth every penny. I can get past screaming toddlers at Target with my Bose plugged into red noise from the White Noise Ambience by logicworks app. Even if you aren’t comfortable masking sound with sound, the earbuds bring the sounds around you down a notch if you just plug them into your phone and turn them on. In the on position, the noise cancelling is activated and the sound around you becomes dimmer.

I commend Bose on top notch customer service too. The noise cancelling button on my first pair stopped working after I’d had them for about 8 months. Getting a replacement under warranty was a rather painless process. I only had to pay shipping for my replacement.

The Bose QuietComfort earbuds are specific to Apple or android products, so make sure to get the right ones for your device.

Finding the right protection for you may be a trial and error process. I encourage you to keep trying until you find the products that are most suitable for you. Living with hyperacusis or other sound sensitivities can be very isolating, so finding the right hearing protection can be incredibly liberating. There is joy in being able to do something as simple as shop in a grocery store after finding the right protection against the music and the sounds of other shoppers.

As a caveat, I’ve spoken with some audiologists who warn against overprotecting the ears. There’s a theory among them that overprotection prompts the auditory system to try harder to detect sounds, making hyperacusis more severe in the long run. I can’t speak to the validity of that theory, but I urge you to speak to the professionals in your life and do your own research to determine the level of protection that is appropriate for your situation.

Blocking out sound keeps my confusion at bay and enhances my productivity, so it’s a choice I make. I do try to spend time without any protection, but I’m never able to focus and accomplish anything I consider worthwhile when my ears are exposed to the sounds around me.

Best wishes on your journey to finding the perfect ear protection!

Share your thoughts. What kinds of ear protection work for you, and how often do you use ear protection?

Disclosure: I do participate in the Amazon Associates program so purchases made through the Amazon links in my posts can earn me a small percentage of the purchase price, without adding anything to your cost for a product.

Dark chalkboard with healthy living written in green chalk in the middle and other words associated with healthy living the central words.

Why Are So Many Disabled People Offended by Good Advice?

Another fatalistic post about chronic illness and disability is circulating. I’ve seen different manifestations of this attitude elsewhere and I’ve always been a bit confused about the level of defensiveness behind sentiments like this. Here it is:

http://eritated.tumblr.com/post/147737743555/if-youre-about-to-open-your-mouth-and-suggest-one

I’ve been ill for a long time. When I gained weight in 2006, premenstrual dysphoric disorder (PMDD) raised it’s ugly head. I fought against the PMDD until I was cured in December of 2014 by a hysterectomy. But before I was cured, I experienced debilitating brain changes brought on by psychiatry’s misguided efforts to treat what was believed to be a run of the mill mood disorder with loads of toxic drugs and brain damaging electroconvulsive therapy. I didn’t initially choose to take psych drugs for PMDD. I was manipulated and coerced into taking them. When I started taking psych drugs around 2006, the doctors who prescribed the drugs were a lot like rapists. I was not allowed to say no. As time passed, my consent to take more drugs was more like the consent of a person who had been beaten and brainwashed. Despite these dynamics, there were times when the drugs helped–but those times were short lived. And as one drug lost effectiveness, another was always on offer.

I’m still disabled because of the changes to my brain, so I’ve spent years living life as a chronically ill and disabled person. I’m very qualified to speak on this topic. But the sentiment in this tumblr post and similar sentiments I’ve read before in disability community forums puzzle me.

Are chronically ill people so profoundly confused about the genesis of disease that we believe it is due to nothing more than bad luck, bad genes or other happenstance? Are we caught in a sort of Stockholm syndrome type relationship with Western medicine, which attempts to treat symptoms but rarely addresses underlying causes, and often hurts us in the process of offering temporary solutions? Are we so attached to our illness and disabled identities that we don’t want to consider the possibility of life as well or non-disabled people?

Those questions come to my mind as I consider why the post from eritated’s blog seems to have resonated so deeply with so many chronically ill people.

Obesity and high-fat diets have been established as conditions that promote inflammation. Dietary factors and obesity are estimated to account for over 1/3 of cancer deaths in the US.

Vegetarians and vegans are less likely to be obese, so recommending vegetarianism or veganism to a chronically ill person is a logical suggestion for the treatment of illness. Of course a plant based diet is not right for all people, but it may help some. Exercise likewise contributes to a reduced obesity for many people, so is also good advice. Yoga is a form of exercise, so it can contribute to lower obesity and therefore improved health. Some chronically ill people don’t consume nutritionally balanced diets, so vitamins might help a person to get nutrients that are missing from the foods they eat.

Stopping all medications may also be helpful for some people. I’m not the only person who has problems metabolizing medications. For people like me, stopping medications that offer debilitating side effects instead of healing for the original problem is a very good idea.

Sleep loss affects health in a negative way, so advice to get sleep a good amount of sleep is sensible. Preliminary evidence suggests pot can be a useful treatment for some conditions, such as epilepsy, but it too can have side effects.

Yoga, tai chi, and acupuncture have been demonstrated as effective in helping with pain management. Optimism is beneficial to physical and mental health.

That leaves us with ‘natural remedies’—a description so vague that I don’t think it can’t be addressed here, and colon cleansing, which I agree doesn’t seem to be a sensible treatment for anything—even an itchy rectum.

We’ve now established that most of the advice that eritated doesn’t want to hear is supported by evidence as beneficial. So I’m back at square one, wondering why eritated and people who celebrate such posts are so hostile towards good advice.

I think the perspective of eritated and chronically ill people like eritated is similar to the following analogy: Imagine I have a decently built small sedan, but it’s getting a little older. Parts are starting to wear out and replacing them is expensive and time consuming. I take my car to the mechanic, who explains that my car needs regular oil changes, which I haven’t been getting, and that a better quality gasoline could help prevent buildup in my engine. A new car might be able to handle any grade of gasoline, but my older model needs a little more TLC.

The problem is—I can’t afford a high grade of gasoline for my car—but instead of explaining how better gas is out of my reach, I rage against my mechanic’s sound advice and resent that he even offered it. I take my car home and curse its inability to function well without regular maintenance. Maybe I even call all of my friends and complain about how big an asshole the mechanic was for even suggesting that I follow basic engineering precepts to keep my car running. Couldn’t the mechanic have at least offered me a small tweak to get me through the next 10,000 miles?

Another mechanic with the same qualifications as the first learns of my dilemma and reaches out to me. She has a superfluid rep visit her shop a few times a month and offers me a less expensive fluid that can free me from the hassle of getting regular oil changes and buying quality fuel. She assures me her superfluid has research behind it and is safe to use. The superfluid is more accessible than regular oil changes or quality fuel. I try it once and it gets my car to rev in a way it hasn’t revved in years. But there’s a big problem. After a few months on superfluid–parts on my car start to break that generally don’t break on cars until they have 300k miles, my car only has 90k. The mechanic who sold me the superfluid assures me it’s just a coincidence. Since she’s such an awesome salesperson, and I so badly need a running car, I believe her. I want to believe her. When critics suggest the superfluid is only a temporary fix and that it will destroy my car in the long run, I respond that they are superfluid shaming and promoting broken car stigma. My critics, duly chastised, slink away.

Like cars, human bodies require certain conditions to attain optimal functioning and avoid breakdowns. Many of these conditions are difficult to attain when a person has limited financial resources, limited access to transportation and recreation, and limited access to education that can help them recognize which advice is sound and which advice is hurtful.

There are also limitations directly associated with disability. In my case, I experience profound sensitivity to sound is a barrier to environments like gyms and even some parks where a less sound-sensitive person might be able to exercise. My inability to multitask is a barrier to creating healthier meals, because cooking usually involves multitasking. But these barriers and limitations don’t equate to a good reason to bitterly reject sound advice that could improve my health. Instead they create opportunity to expand the conversation on the specific needs disabled and chronically ill people may have to have addressed before long term healing can take place.

I’ll continue to read and listen to advice with an open mind. I’m not attached to identifying as ill or disabled. I don’t believe that my health challenges are inevitable or insurmountable. I believe that environmental and lifestyle changes are absolutely the key to recovering from many illnesses and diseases.

I understand that some diseases are not currently curable, and no amount of nutrition or exercise will reverse them. I understand that people affected by incurable diseases or permanent disabilities probably aren’t interested in hearing about remedies that work for others. But many chronic conditions are treatable or even reversible. Illnesses that pharmaceuticals barely keep at bay might be completely curable through nutrition, exercise, and other lifestyle changes.

If other people with health challenges choose to dismiss good advice, I can only wish them well while simultaneously knowing that pills and wishes will not sustain them in the long run. They can choose for their bodies whatever they like, but if the choices are unhealthy, they can anticipate longer periods of illness. To those who respond in defense of drugs in exclusion of nutrition and exercise, I challenge them to reevaluate the effects of their choices in 20 or 30 years.

The view over the Hollywood sign at night in Los Angeles, California, USA

Why I Resigned From The Mighty

 

I was in a car, on my way to a work retreat for my new job at The Mighty, a popular mental health and disability blog site. The driver, a woman from Fresno who blogs about her life with a vascular birthmark, explained that she didn’t care for driving in Los Angeles. She turned to another woman who sat in the passenger seat, a blogger who focuses on disability issues from the perspective of a Christian and a parent of disabled children. After talk of traffic was over, they resumed their conversation about the famous bloggers who had reached out to them.

I tried to block the sound of their voices from my mind so that I could be fully engaged with the person sitting next to me. I sat in the backseat and was enjoying a nice conversation with another new co-worker who had flown from her home in New Orleans to participate in today’s activities. I’d perked up when she’d told me where she was from. Our conversation had taken off when I explained that I loved the city and that my family has some Creole ancestry.

It was a beautiful California day, and I was looking forward to the work retreat at The Mighty. The driver maneuvered though Hollywood until she found parking in a cement garage. My new friend from New Orleans got into her wheelchair, and we all ascended a ramp that ended at a glass door. I could already hear loud music, so I pushed my earplugs deeper into my ear canals. When the door opened I was blasted by the sound. I grabbed my Peltor muffs from the strap of my purse and placed them on my head. The confusion and disorientation I experience in response to exposure to loud or prolonged sound descended. I realized I was chanting, “I’m in hell. I’m in hell. I’m in hell.”

My new coworkers seemed to avoid my gaze. We navigated through hallways and corridors, and the music persisted in its relentless assault. When we entered the vast room in which the retreat was to be held, the CEO’s wife noted my earmuffs and steered me aside.

“I’m sorry about the music. We’re trying to get it turned off. You can stay over here in this quieter area,” she offered. Her look of concern seemed sincere, but I wondered how expecting me to withstand such an auditory onslaught was acceptable when it would not have been likewise okay to ask my wheelchair-using co-worker to attend the conference by ascending a flight of stairs.

The apprehensions I’d initially had about joining the team returned to my mind. I’d allowed my originally cautious disposition to be overtaken by optimism when I had accepted a position of contributing editor with The Mighty, but my hopes were about to be dashed.

My caution about working with the company was twofold. First, I’m autistic, and The Mighty remains partnered with Autism Speaks, an organization that was at the forefront of promoting parent-centered propaganda about the perceived horrors associated with autism and autistic people. Autism Speaks persisted in this spirit until its board of directors voted to change its mission statement in September of 2016. But I believe in the possibility of both personal and organizational transformation, so I pushed that concern to the back of my mind.

The second reason for my prudence rested in the ways the notion of mental illness is most often discussed on The Mighty. Hundreds of contributors to the mental illness section of the site embrace and support psychiatric drug use. I tried to look beyond that as well, especially when the editor-in-chief informed me that people were welcome to present anti-psychiatry perspectives too, as long as they were worded in a constructive manner.

Since I had agreed to edit the contributions to the chronic illness portion of the site, I thought I would be able to keep my personal views on the autism and mental health components of the site at arms length. I thought I could promote empathy and understanding for people living with chronic illnesses by promoting their stories, yet remain disengaged from the problematic elements present in the autism and mental illness categories.

I remained in the quieter area until I was told the music had been extinguished. Within minutes of walking from the quiet area into the main conference room, I realized how misplaced my optimism had been. I removed my Peltor muffs and earplugs as the newly hired Chief Revenue Officer launched into her presentation.

“If the CEO for Abilify was in the front row right now, he’d be salivating,” she declared. She had just explained her strategic plan for monetizing the site with pharmaceutical advertising. But the plan didn’t end there. The Mighty planned to give drug companies user data that would help focus the pharmaceutical manufacturer’s marketing efforts.

After I heard this, I stood and left the room again. I had some soul searching to do.

The staff at The Mighty are not greedy ogres at the exclusive beck and call of big pharma. They are real human beings who care deeply about changing perceptions about disability via the sharing of stories written primarily by disabled people and their families. They seek to promote ideas of inclusion and acceptance in the face of pervasive ‘othering’ and discrimination.

The Mighty staff wants to grow a platform that helps people find comfort in the perspectives of those who came before them, at times when they find themselves on the receiving end of a life-changing diagnosis or in the throes of undiagnosed illness. The folks at The Mighty are legitimately good people who want to change the conversation about disability. They hope to make the world a better place for those of us who are roadblocked by larger society because of our differences. They want to monetize the operation in large part so that they can be in a position to pay contributors, who they readily acknowledge are the site’s raison d’être.

But despite the merits of The Mighty staff, my caution transformed to distrust when plans for an alliance with pharmaceutical makers was revealed as a core component of creating revenue.

As soon as I returned home I submitted my resignation:

It is with a feeling of deep disappointment that I offer my resignation. I will be very direct as to why.

I was horrified to learn at the retreat that the company plans to monetize the site by pairing with pharmaceutical companies. Had I known in advance that was the chosen strategy to create revenue, I would have declined the position initially, rather than accept the resources you invested in me.

Let me offer a brief synopsis of my personal journey through healthcare. After reading it, I think you will better understand my stance:

In 2014, after I had been a patient of the mental health and psychiatric treatment communities for over 20 years, I suffered an iatrogenic brain injury. According to a neurologist, the injury was made possible by years of exposure to various psychiatric drugs, but specifically because of years of exposure to Abilify. Immediately following the injury, I lost my ability to read, write, and speak. I presented in the emergency room with symptoms similar to those seen in stroke patients. It has taken the intervening years for me to even partially recover these skills. I still cannot write legibly, I must type in order to make my written communication understood. And as you all saw at the retreat, I can still lose my speech if I am exposed to too much sound, in terms of both volume and duration. I did not experience that type of inability to speak prior to my injury. My previous autism-related challenges with spoken language had been of an entirely different character.

The injury damaged my already compromised auditory system as well. I’ve lived with Auditory Processing Disorder (APD) for my entire life, but it too went unrecognized by the mental health community, despite the fact that my inability to hear in environments with background noise was an enormous factor in many of the life stresses I sought help for. Rather than listen to my reports of these difficulties and try to uncover an underlying cause, psychiatrists threw drugs at me. My audiologist, the renowned Dr. Jack Katz, documented that my APD was profoundly exacerbated by the treatment modalities I underwent on the orders of psychiatrists.

Over the lengthy course of all of my interactions with the mental health community, my autism, like my APD, remained overlooked, and was instead characterized as bipolar disorder, borderline personality disorder, major depressive disorder, general anxiety disorder, or PTSD — it seemed like half of the DSM was thrown at me. But partly because I’m outside of the stereotypical autism demographic — white and male — my autism remained unrecognized until after my brain injury exacerbated the most problematic aspects of the condition, such as my hyperacusis, misophonia, auditory processing disorder, and dysgraphia.

After undergoing genetic testing, I learned in 2015 I have a CYP2d6 gene mutation that makes me a slow metabolizer of many medications, particularly certain categories of psych medications. A person who metabolizes a drug slowly cannot tolerate the same dosages as normal metabolizers, and is more prone to side effects. I had complained of these side effects to the mental health community for years, but my complaints were dismissed as symptoms of my ‘mental illness’. I also have a yet undiagnosed autoimmune condition that permits the allergic-type reactions I have to drugs and other things my body perceives as toxic to detrimentally affect my brain. I am trying to work with neuroimmunologists to understand the mechanisms behind these events.

Since I stopped taking all psychiatric mediations, my mood is phenomenal, despite the obstacles to tasks of daily living and problems with executive function I experience as a result of both my injury and my autism. I credit my meditation practice, the wisdom gained from my journey through the mental health system, and the hysterectomy I had to cure my premenstrual dysphoric disorder (a condition that I have observed seems to be common among autistic women), for my significantly improved mood.

I am currently on Social Security Disability, but I have never stopped trying to re-enter the workforce. I hoped this was my chance.

When I joined The Mighty, I thought I would be able to compartmentalize my views on psychiatry from the way mental health is discussed on the site. I have intentionally abstained from participating in any conversation on the topic, because I realize my perspective is at odds with the majority of the mental health perspectives presented in the forum. I thought I could peacefully co-exist with the difference of opinion. But I have to draw the line with being associated with a site that plans to actively promote psychiatric drugs and allow for data mining among registered users to this end.

I believed in my heart that I could play an important role in promoting the writings of people who live with chronic illness. I hoped I could help expand empathy and understanding. So it is with great sadness that I depart from that role. I’m not only a member of the chronic illness community because of my autoimmune and genetically mediated intolerance to drugs and other substances, I’m a member of the autistic community as well. The autistic community has been on the wrong side of medicalization and medication for far too long. I cannot in good conscience lend my voice or my skills to a platform that associates with drug companies that have caused so much destruction to a community I care very deeply about.

Sincerely,

Twilah Hiari

CEO Mike Porath graciously responded to my resignation.

Twilah, I’m sorry to hear this, and I’m sorry that the day of the retreat was a challenging one for you too, but I appreciate you giving us the context of your personal experiences in explaining your decision.

I don’t know if and how we can be helpful to you down the road, but please don’t hesitate to reach out if we can be. I’m sorry this didn’t work out, but I respect your decision and I speak for all of us when I say we truly wish you the best.

I also wish The Mighty the best. It is my deepest hope that they can help people, but it is my greatest fear that they will open doors to more psychiatric injuries.

Clarification: Dr. Katz documented that my APD was exacerbated by ECT treatments. I apologize that my original writing did not make this clear.

This post was originally published at madinamerica.com