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.

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.

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

Clarification regarding my PMDD-free post

I’m offering this post to clear up some misunderstandings related to my 2 Years PMDD-free post. I understand that the words I chose may have facilitated the misinterpretations that some people had of the piece.

My first priority is to advocate for more research into PMDD. I would very much like for non-surgical treatments or cures to be made available to women with PMDD so that we do not have to resort to surgery. But with that being said, presently, hysterectomy and bilateral oophorectomy is the only known permanent cure for PMDD, and I think that when a woman with PMDD requests surgery, her request should be taken seriously.

I don’t think hysterectomy is desired as a first line treatment by many or perhaps even any woman, and I am not advocating for ‘handing out hysterectomies’ or ‘ripping out uteruses’. I do think, however, that a woman whose very ability to live is being compromised by PMDD should be able to have an adult discussion with her treating physician about the possibility of surgery. I do understand that a hysterectomy is a major and irreversible surgery and like all major surgeries, comes with some degree of risk. I also understand that it is not appropriate for and cannot be undertaken by all women. I know that there are lots of factors to consider in such a decision. I would hope that any capable physician could address these issues and concerns when meeting with the patient affected by PMDD.

I also never stated there was a definitive link between autism and PMDD. There is no research into correlation or causation between autism and PMDD that I am aware of, which is why I characterized my discussion of it as anecdotal. The possibility of an underlying shared mechanism between autism and PMDD crossed my mind after numerous discussions I had with other women who are both autistic and affected by PMDD. I never said it was scientific. I am asking for studies to be conducted to prove or disprove a relationship.

The same thing applies to my question as to whether PMDD is an expression of an autoimmune process. It’s a question that has crossed my mind, I can offer no evidence in support of my hypothesis. I said that clearly. I would love for research to be conducted to determine whether my thought process is correct.

The bottom line is I want more research so that women with PMDD can have more options for treatment. I want women who complain of PMDD to be taken seriously by their health care providers. And I want women who do ask for hysterectomies to be treated as autonomous decision making adults who are capable of having a discussion about the pros and cons, and risks and benefits of hysterectomy with the physicians who are treating them.

I would actually be delighted if any or all of my speculations about PMDD causation were proven wrong, because that would mean that someone is actually doing some research. I want women with PMDD, both neurodivergent and neurotypical, to be able live the lives they envision for themselves. I want women with PMDD to have their happiness and equanimity restored, but more critically I want the women with PMDD and their families to no longer fear losing women to preventable suicides. I want the medical community to take the complaints of women with PMDD seriously. If those things happened and every single thing I’ve ever said about PMDD turned out to be wrong, I’ll be overjoyed.

Typed word hormone overlaid with word progesterone

Why I’m Not Celebrating 2 Years PMDD-Free

On December 24, 2014, I had a hysterectomy and bilateral oophorectomy that cured the PMDD I had been fighting for almost a decade. PMDD stands for premenstrual dysphoric disorder, which is a hormone based mental illness with extreme manifestations and consequences. PMDD is a beast that can transform the most healthy and loving minds into wicked and self loathing shells of consciousness. And it works that evil like clockwork, each and every month.

So why aren’t I celebrating my freedom from PMDD? My peace and equanimity have been restored. I no longer take any psych drugs. My only prescription is estradiol as a hormone replacement. I love my husband again. The crying fits are over. My motivation is restored. Suicidal thoughts are nothing more than a dark memory that lives in an ever more distant past.

I’m not celebrating because so many of my sisters are still stricken by this disease. They are pleading with general practitioners, OBGYNs, and psychiatrists for access to effective treatments. Yet they remain unheard. My sisters are remanded to the care of mental health professionals who ply them with therapy and scripts for SSRIs, SNRIs, and benzodiazepines, none of which offer long term relief from the horrors of PMDD.

Why are we still suffering when there is a cure? A hysterectomy and bilateral oophorectomy, a relatively inexpensive surgery that rarely has major complications can permanently end our monthly misery.

I think there are many answers to the question above. First, many practitioners of medicine do not take the complaints of women seriously. Studies show that women’s reports of pain are commonly dismissed by physicians and women’s reports of disease processes are written off as psychosomatic.

This happens in the face of other studies that demonstrate that women, especially those of childbearing age, are affected by hard-to-diagnose autoimmune diseases at a much greater rate than men. Medicine has a very long history of ignoring the legitimate complaints of women. We are frequently handed psychiatric diagnoses before we are offered lab tests or diagnostic imaging.

Many ailments that were once thought to be psychogenic are now known to have a physical genesis. It wasn’t until the 1980s that h. pylori was demonstrated to be the mechanism behind peptic ulcer disease, which was previously blamed on stress. The 1980s also unveiled the etiology of Lyme disease. In the more remote past, epilepsy and Crohn’s disease were also once thought to be psychogenic.

The etiology of PMDD is not yet known. I suspect it is autoimmune in nature and is somewhat akin to an allergy to progesterone. But that is simply anecdote at this point. Another anecdotal observation I have made is that PMDD, dysmenorrhea, and other symptoms of hormonal disruption or intolerance are very common among women on the autism spectrum.

In medical terms PMDD seems to be commonly co-morbid with autism. But we autistic women are still fighting for recognition because there is an ongoing misperception that autism is a condition that almost exclusively affects males. Autistic women, particularly those of us born before the 1990s, are commonly misdiagnosed with bipolar disorder or borderline personality disorder before reaching a point of accurate diagnosis. Obtaining effective health care as autistic women is an uphill battle that is especially steep and discouraging.

If research into PMDD continues to be set aside because it remains classified as a psychiatric disorder, most theories of PMDD causation will remain anecdotal. And in the meantime more women will lose their quality of life or in some cases their actual lives.

Women affected by PMDD are discouraged and sometimes outright barred from access to the surgery that can cure us. Many physician’s perspectives are still so paternalistic that they do not believe we should be granted the freedom to part with our reproductive organs, even if those organs are destroying us.

We’re up against a lot in the effort to bring attention and research to PMDD. We’re up against a culture who’s instinctual reaction to perceived ‘new’ diagnoses is gaslighting, which is the systematic repudiation of the report of the afflicted person, no matter how legitimate that report may be. Couple this propensity to gaslight people with ‘new’ disorders with a low regard for the credibility of women’s reports to their health care providers, and it starts to look like we have a very long and difficult road ahead of us in terms of awareness and research.

We also face proponents of toxic femininity, who tell us that PMDD is a cultural myth so that they can promote a fantastical feminine ideal where female hormones play no role in disease processes. I’m sure that all of the women with polycystic ovarian syndrome and endometriosis, syndromes that are also frequently co-morbid with PMDD, would love for that fantasy to be true, but unfortunately, it remains a fantasy.

So I’m not celebrating my 2-year anniversary of freedom from PMDD. I can’t celebrate while my sisters suffer. I will continue to use my small online platform to advocate for recognition of and research into this disorder, because our complaints are valid, and we cannot remain unheard.

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Let’s Talk About Privilege and Disability Again

Recently I was in an online disability discussion forum for disability X. One forum member, who I’ll call Jane, chided the other forum members for not contributing more money to a fundraiser that was underway to fund efforts to find a cure for disability X. Jane went on to say that finding a cure for disability X should be the biggest priority of everyone in the forum.

Now, disability X is never fatal in and of itself, but it can prevent you from working. From those premises I concluded that it was really messed up for Jane to be castigating people, many of whom can’t work and therefore have income limitations, for not donating more money that they may not have to fund a cure for a non-lethal health condition.

I realize that not being able to work may lead to death, especially in countries like the US, where financial assistance programs for disabled people are paltry or non-existent. That was part of my point. But I also realize that some people live with disabilities that not only prevent them from working, but can at any moment kill them in their own right. And people with those types of potentionally lethal disabilities are among the most cherished people in my life.

So, in what I now realize was a somewhat socially inconsiderate way, I responded to Jane’s post by reminding her that not all people with disability X can or should make donating a priority. I used a personal example and said something to the effect of, “I didn’t donate until very recently because I had to prioritize using my financial resources to help keep a friend from being killed by disability Y. I don’t agree with the assumption that donating to this fund should be everyone’s biggest priority.” I imagined that would be the end of it. Jane might agree, disagree, or ignore me, and life would go on, at least for those of us with non life threatening health conditions.

Imagine my surprise when the gates of Hades swung open and a flaming Facebook Messenger note landed in my inbox from the moderator of the group. I’ll call her Megan. I was told that my post had been deleted and a demand was made for me to explain why I’d thought it appropriate to berate Jane, who’d generously offered to match donations for the fundraiser. I responded with something along the lines of, “I didn’t berate Jane, but I wrote what I did because her post reeked of financial privilege.”

I was somewhat unprepared for the intensity with which hellfire and brimstone can scorch a person’s laptop. Messenger continued to rain down a cascade of flaming messages from Megan castigating me for using the word privilege and again accusing me of berating Jane, who was characterized as a benevolent, generous, selfless matching donor. Megan told me that a discussion of privilege had no place in that disability forum. Megan even threw in a Joyce Meyer quote admonishing me to not take offense if offense is given. Ha! I’d never heard of Joyce Meyer before. But a quick Google search revealed to me that she seems pretty big on blaming individuals for having sane human reactions to injustice issues.

And that’s where this blog post really jumps off. Because I absolutely disagree with M that a discussion of privilege doesn’t belong in a disability forum.

According to the Cornell University 2014 Disability Status Report for the United States, the poverty rate for people with disabilities is 28.1%, while the poverty rate for people without disabilities is 12.2%. Since poverty affects more than 1 in every 4 disabled persons in my country, I think that discussions of poverty and privilege in disability forums should be front and center.

Megan had reacted to the word privilege like it was the dirtiest obscenity that I could’ve written. Megan even challenged me to point out how privilege had supplanted Megan’s hard work and resulting presumably stable financial position. (I hadn’t actually presumed anything about her financial status, but she acted like I thought she was wealthy.) Now I hadn’t been talking about Megan at all, but once the pesky P word came out, Megan sure took it personally.

There are a lot of misunderstandings about the P word, and it’s usually most misunderstood by those who benefit from it.

Having privilege does not necessarily mean you are a bad human being.

Having privilege does not necessarily mean you haven’t worked hard for what you have.

Having privilege does not necessarily mean that you are an oppressor.

But you can have privilege and be bad, lazy and oppressive. And you are way more likely to be any or all of those things if you refuse to acknowledge your privilege.

I have privilege. I have financial privilege, which is basically privilege by proxy because of my well paid spouse. I have privilege because I live in a mostly safe neighborhood. I have privilege because I’m educated. Although I am a person of color, I have privilege conferred to me by my light skin. I have privilege because I’m a native speaker of English in a primarily English speaking country. I have yet more privilege because the way I speak English is considered ‘standard’ as opposed to being regional or of a dialect associated with a minority group. I could go on and on, because I’m really a very privileged person.

Nothing in the paragraph above means I haven’t worked my ass off. I went from homelessness to college graduate largely due to my own efforts. I’m a sexual assault and child abuse survivor. I’m a medical abuse survivor. I’m autistic. I have severe hyperacusis. I also have severe central auditory processing disorder, which makes me functionally deaf in situations where there’s background noise. My life has not been easy. But my privilege exists despite the reality of any of those things.

Acknowledging my privilege is acknowledging that even though I worked my ass off, and it has been a damned hard road, that I still have or had qualities that removed from my path some of the obstacles that may stand in front of others. Despite my hard work I will never tell another person who has faced different or even the same obstacles that they should have ended up where I am, in a place of privilege. Because that’s bullshit. It’s demeaning, and it’s wrong.

Now I realize that distinguishing disabilities into categories of immediately life threatening and not immediately life threatening is a delicate thing to talk about. Like I said, if you can’t work, you might very well die. My point isn’t to create a hierarchy of disability badness and divide the disability community, but rather to point out that there are lots disability dynamics worth discussing, rather than ignoring.

All people involved in creating or advocating in disability forums need to be open to discussions about how some of us are dying because we don’t all have access to the same resources, regardless of how hard we’ve worked or would be willing to work if we could.

Looking back, I don’t think necessarily think Jane meant to make anyone feel terrible, but I can’t be sure. I certainly don’t think my response berated Jane. It wasn’t my intent to berate anyone. I intended for my response to prompt thought and reflection on the potential impact Jane’s words might have on disabled people who can’t work or don’t otherwise have financial resources and therefore can’t offer donations. If I could write it again, I would word it differently. I’ll be the last person to claim to have never typed anything insensitive. So while my choice of words may have been less than ideal, I stand by my sentiment. Discussions of privilege in disability forums should be central, rather than censored, because some of us are dying out here.

An Open Letter to Special Needs Parents

Hey you! You with the blog that walks through the everyday challenges you face with your child. You who writes passionate pieces that call for an understanding of your child’s unique needs.

I need to talk to you.

I am the type of person that your child may become in the next few decades. I am a neurodivergent adult navigating the multitude of challenges that exist in a world that has a long way to go to before achieving a full level of acceptance of those with brain differences. You and I need to work together to educate and inform. We need to work together to make the world more welcoming for your child with autism. For your child with sensory processing disorder or auditory processing disorder. For your child with ADD or ADHD. For your child with anxiety or panic. For your child with any of a litany of experiences that place him or her outside of the neurological mainstream.

I have walked a path similar to the one your child is walking now. I’ve walked it since 1975, when the diagnoses I listed above were unknown or even more poorly understood than they remain today. I walked it without a mother or father like you who held my hand or picked me up when I stumbled. I walked it alone, sometimes confidently, and sometimes cautiously.

I was graced with moments when people outside of my family, people who I now think of as precious gems, offered me safety and security, however briefly. I was cursed by times when I struggled unsupported and almost lost my life. Worse yet were the times when I failed myself by losing hope.

We need to be allies, but I am saddened that many times we seem to be at odds. When a look of horror crosses my face as I turn up the red noise on my noise cancelling headphones and run from your child as she screams in the grocery store, don’t assume I’m a callous jerk. When I force back tears and grit my teeth as your child melts down at the pharmacy, don’t call me evil for wearing a look of displeasure before I am forced by the noise to depart without my medication.

I want very much for your child and I to be able to share the same space. The same stimuli that torment your child, causing him to cry and wail, hurt me just as much. Please protect your child. I know there will be trial and error. You will have to experiment with sunglasses, ear muffs and ear defenders, and various sensory objects. Please keep trying. The pain that your child has undergone by the time they reach the point of the 110 decibel meltdown that drives me back to my home is a pain that you simply cannot fathom.

I am your ally. I am the person who will ask the store manager to turn down the music. I will ask the receptionist at the doctor’s office to turn down the television. I am the person who will give you a crash course in creating quiet. I am the person who will answer questions about why certain things hurt sensory sensitive people in the ways that they do. I am the person who can offer survival strategies for an unwelcoming world. I am also the person who can only risk going to Target or the grocery store once a week, because my noise cancelling earbuds can’t block all sounds, and a single encounter with a 110dB shriek can ruin my cognition and concentration for the rest of the day. With sound of prolonged intensity and exposure, I can become completely non-verbal.

I have to delegate my sensory risk taking and my energy expenditures, as does your child. So please understand, if in a moment of hurt you see a look cross my face that is less than kind, it is because I am reaching as deep as I can into my heart for compassion for you, while in the midst of great pain and the rapid onset of immense confusion. My expression may be strained as I try to balance finding empathy for your child and respecting my own need to protect myself.

Please understand that we all belong together in this world, and we must share the same roads. Should we pass one another, and our needs seem to be in conflict, it may be because my needs and the needs of your child are actually the same. We are united by experiences, and only separated by age.

Auditory Processing Disorder, What does it Mean?

As I explained in my last post, I was liberated by my Auditory Processing Disorder (APD) diagnosis. Of the 4 types of APD – Decoding, Tolerance-fading memory, Integration, and Organization, I have been confirmed to experience 3. My audiologist states I experience issues with Decoding, Tolerance-fading memory and Integration. He states he cannot rule out Organization as a potential component as well.

Post liberation, I find it easier to communicate with people because I can ask for conditions that facilitate my ability to hear and understand speech such as a quiet environment and seating where I can lip read. But people wonder: What was I hearing before?

Let me explain.

Have you ever used speech to text on your smartphone and watched the screen as the program sorts through multiple potential words and spellings until it accurately or inaccurately decides what you were trying to say?

That’s how I hear. It’s almost like Siri and I were separated at birth.

When I hear speech, I sort through multiple potential spellings and meanings and try to match the vague sounds I hear to the context of the conversation. I picture the potential spellings of words in my head nonstop to aid in my understanding. I think of this visual spelling habit as my internal closed captioning system.

I hear sound just fine, but individual speech sounds are very indistinct. When a word starts with the letter P for instance, I simply don’t hear the P. You say the word ‘play’, and I hear ‘lay’. You say ‘piece’, I hear ‘ees’. Well, I hear ‘ees’ if I’m lucky and there’s no background noise. Add background noise to the equation and I’ll only hear a long e  or ‘ee’. That’s a hell of a lot of English words to sort through to figure out which long e word you were using.

Okay, you may be thinking. That’s not that big of a deal, you obviously know people aren’t saying ‘ees’ or ‘ee’ to you, right? Just pay attention and you can sort it out.

Well, compound what I’ve described with other phonemes that challenge me and it becomes more problematic. I can’t hear most L sounds correctly. So ‘puzzle’ becomes ‘uzza’ because both P and L are involved. Imagine playing a game of hangman or Wheel of Fortune when you only have a few letters. That is what auditory life is like for me. I only managed to get this far because I have tremendous puzzle solving skills. Once you understand these dynamics, it is easy to understand how people with APD and fewer problem solving skills remain nonverbal.

In a face to face situation with no background noise I can supplement my understanding with lip reading and get by. On the phone I have no such benefit. You can see how I might fall behind in conversation as I’m trying to sort out sounds and the person to whom I’m speaking is just rambling on full speed ahead as people are prone to do.

Think about the multitude of unnecessary words you sprinkle into phone conversations. Think about the noise behind you when you use the phone. Is there music? Are you sitting at a table where others are having a conversation? Are you in a loud office environment? Are you alternating speaking to the person on the phone and also speaking to someone in the room with you? Ever turn your head from the phone to yell at your kid who was already screaming in the background? And God forbid, are you using the freaking speaker phone?

Now imagine someone like me on the other end of that phone conversation. I already didn’t stand a chance hearing 50% of what you said without visual context clues. Now you’ve just reduced my understanding to 20% or even 10%. I will probably ask you to repeat yourself, and you will probably become impatient and annoyed with me. You will think I’m not paying attention and when you later learn I have completely misunderstood something you said, you will assume I am stupid or that I suffer from a refusal to follow directions.

Think for a second about the social ramifications.

I have been absolutely shamed for my inability to hear, even in places where one might think people are peaceful and enlightened.

I once took a yoga class at a local community center. I had not yet been diagnosed with auditory processing disorder. When I arrived, the only spots left were in the back of the room, quite far from the instructor. Each time the instructor asked us to change asanas, I looked at the mirrors and at the movements of my classmates to understand what I was supposed to be doing. I simply couldn’t hear the instructor. I got through the entire series of classes that way and I really enjoyed the yoga experience.

After the last class, many of the students stuck around to thank the instructor and ask her where they could take more classes. The young woman in front of me told the instructor that she had enjoyed the class but that she preferred to be grouped with advanced practitioners in a private studio environment because she found it irritating that the community center had mirrors and that some people, she said while giving me a hard glare, were always looking at the mirrors and at other students instead of focusing on their own practice. I can hear tones perfectly well and her voice was full of contempt.

I felt so ashamed. I had been waiting in line to tell the instructor how much I had enjoyed the class and I had instead learned that this other student had been horribly offended by the efforts I had taken to follow the teacher’s verbal instructions. I turned and left the room after that woman spoke so cruelly, and it took me years to attempt a yoga class again. I knew I couldn’t participate without using visual cues, but clearly that pissed off other students. I didn’t know how else to get through the class, and I didn’t want to anger another practitioner.

I think of the many times I tried speaking with people I didn’t know well, usually coworkers, when they quickly verbally digress in a direction that I can’t follow. I try my best to keep up and I simply can’t. Before I know it they’re yelling at me. “It was a joke!, Don’t you get it?” It becomes clear that I’ve missed a cue, but I don’t understand what cue.

And I respond by smiling like I understand, just to try make the situation smooth again, but they can tell I didn’t understand at all. Their humor then turns to anger and they begin to berate me. “Don’t you have a sense of humor?” “Always so serious!” “Lighten the hell up!” Then they mutter something about what an idiot I am and walk away. This has happened more times than I can count. It sums up my entire working life.

I remember a Thanksgiving dinner at the home of my stepfather, who due to crazy family dynamics, I had not seen in several years.

“Do ya ha any is?” he asked me. There were lots of people at the dinner and the echo prone raised ceilinged home was filled to overflowing with voices.

I had been staring at his mouth, trying to sort out what he was saying. But I simply couldn’t figure it out.

“Do I have any keys?” I guessed back to him. I knew he was a car enthusiast, maybe he wanted to see what I was driving.

His brows lowered and his expression darkened. I was familiar with this disapproving look from my childhood. It was the look he had given me when as a kid I, “just wouldn’t listen.”

“Do you have any kids!?” he blasted back.

“Um, oh, no,” I replied as my face reddened. I really didn’t like making people angry.

These are examples of the things I hear, or rather don’t hear, and their real life implications for social interactions.

I hope this has shed some light on one presentation of auditory processing disorder. I further hope it encourages you to be patient with people who ask for repetition or exhibit misunderstanding. You can never presume that the person to whom you are speaking hears as you do.

On Diagnostic Labels

My writing sometimes explores dynamics involving my disabilities. I live with both hyperacusis, which is an abnormal sensitivity to everyday sounds, and auditory processing disorder, which makes me functionally deaf in multiple environments including those with multiple speakers, background noise or echoes. It also interferes with my ability to remember anything that is shared via speech. Writing about my experiences as a person living with auditory disabilities has sparked some interesting conversations. One such conversation is about the issue of disability labels.

I see the idea of disability labels as somewhat analogous to racial and ethic descriptions in some cases. The labels I see as analogous to racial descriptions I will call benign disorders as they are conditions that are statistically experienced by a minority of people, but are compatible with life. In other cases disorders are things that must be treated or cured in order for life to be sustained. These I will call malignant disorders. Malignant disorders are those that if left untreated, are incompatible with life.

Our challenge is to understand that not all disorders are or should be treated as malignant.

People who live without auditory processing disorder have expressed discomfort and even hostility towards my use of that diagnostic term to refer to my inability to hear in certain situations. I’m guessing it is the word ‘disorder’ that sparks their discomfort, as I’m not aware of any such disdain being levied towards people who identify as hard of hearing, who likewise can’t hear well but have different mechanisms behind their inability to hear. The critics of labels vaguely posit that society would benefit from considering each human as an individual with different capabilities and honoring each person and their needs accordingly, while leaving labels out of the equation.

I disagree.

Let’s examine what a label is. Dictionary.com offers the following: a word or phrase indicating that what follows belongs in a particular category or classification.

It seems that the purpose of a label is descriptive, it helps identify a category in which something belongs. That doesn’t seem bad to me. I like knowing where things belong. But in life outside of the dictionary we have to look at how labels are used.

I think back on some of the labels that have been applied to me. Among them are: stupid, smart, crazy, sane, emotional, analytical, thin, fat, overachiever, underachiever, poor, wealthy, female, straight, dyke, nigger, white bitch, professional, unemployed, educated, ignorant, single, married, healthy, sick. There are many more than I can list here.

But you notice the contradictions?

All of the labels have been applied to me at some point when the person applying the label thought they had enough information about me to place me in a category among others who they thought also belonged there. Some of the labels are considered complimentary, some are considered slurs. Some of the labels were applied to me in the past and no one would think to apply them now. Others are a matter of perspective. To a person with no roof over her head, I may appear rich. To a billionaire I probably appear poor. If we think of the implications of rich and poor beyond the financial, a person with more friends might call me poor and a person with no friends might call me rich.

It’s clear that sometimes labels are contextual and subjective. Sometimes they’re nothing more than insults. Sometimes they can be confidence boosters. They can prompt feelings of hurt or inspiration, shame or motivation.

But what about diagnostic labels? Do they work the same way? What happens when we contrast historical diagnostic labels with current diagnostic labels?

Epilepsy, anxiety, paralysis, developmental disability, Hansen’s disease, non verbal, schizophrenia.

Falling sickness, hysteria, lameness, retardation, leprosy, dumb, madness.

We see the contemporary labels as more descriptive and less demeaning. But do the new labels help us see the whole person?

No.

But that is not a problem with the label. That is a problem with how we react to hearing a brief description that we call a label. We need to get beyond the philosophical error called the false dichotomy or false dilemma that presents when we hear labels, especially those involving the word ‘disorder’. The false dilemma posits that there are two available categories and you must choose from among them. In actuality, there are far more categories or options than those being presented. The false dilemma rears its head when someone asks you if you are voting for red or blue and ignores that purple is a candidate that you might like to consider.

A false dilemma becomes even more dangerous when not only do you believe that there are only typical states and disordered states, but that disordered states must be malignant or inferior. This is not a problem with the label typical or disordered, it is a problem with thinking this category of disordered is smaller or more restrictive than it is.

I have experienced two things labeled disorders that have profoundly affected my life.

The first is PMDD or Premenstrual Dysphoric Disorder. PMDD is a mood disorder associated with hormones. Having PMDD meant that for two weeks out of every month I’d become severely depressed. My sleep was disrupted, my personal insight became distorted, and my energy level was diminished.

Sometimes I wanted to die.

I do think suicide is logical and possibly appropriate in some cases, such as when a person is terminally ill. But monthly ovulation is not a terminal illness. It’s a normal part of being a biologically female human between the stages of puberty and menopause. So wanting to die because of ovulation is not a typical response. It is a disordered response. A malignant disordered response.

The other disorder I’ve been affected by is Auditory Processing Disorder. For my entire life I’ve had difficulty hearing and understanding spoken language a great deal of the time. I didn’t have access to health care for most of my first 28 years of life so I didn’t discuss the problem with a physician or audiologist.

I’ve known my whole life that I’ve had trouble hearing and understanding speech. But I’d also been told for years that my hearing was fine and that I just needed to pay attention. But I was paying attention.

People with APD can hear sound just fine. We just have difficulty getting meaning from speech sounds. There are generally agreed to be four subtypes of APD, and I have three. The three I have are: decoding- which is the ability to quickly and accurately process speech, tolerance fading memory- which is understanding speech in noise and short term auditory memory, and integration, which means unlike an audiotypical person, I have no binaural symmetry. Therefore the input from my right ear does not match the input from my left, and when the two signals meet in the middle in my brain, my brain has to do more work to sort out the meaning of the signals.

Working with my audiologist has taught me that I simply do not hear some sounds at all. I cannot tell some words apart, even when they are spoken to me clearly and distinctly with no background noise.

I had this going on for my entire life but was told by the audiology tech at student services that my hearing “fine”. I still experienced the day to day fact that I could not get as much information from lectures in a classroom as I could from reading a book.

And I didn’t know why.

I experienced the reality that I had an incredibly hard time speaking up in classes and groups, because I couldn’t figure out how to interject or be sure I was on topic.

And I didn’t know why.

I experienced the reality of having to be guilted into going to gatherings I didn’t want to attend because I was tired of being unable to participate in conversations involving more than one person, or even one person if there was music or other noise in the background. I experienced giving up on speaking entirely in many environments because I could never seem to respond appropriately. I was tired of being mocked, tired of being labeled antisocial, and tired of being called a stuck up bitch because I could not socialize properly.

And I didn’t know why.

These experiences made me lose my voice. I stopped trying to talk so that people would stop ridiculing the off topic things I said. I stopped talking and started smiling instead, I felt it was the best I could do. But that led to other conclusions about me.

I started being asked things like, “Are you just gonna stand there and look pretty?” I got called things like “grinning idiot”.

I started to believe erroneous things about myself too. I began to think that social anxiety was my problem. I didn’t know of anything else that could explain my inability to function in groups. I spent money on therapy that didn’t help. There was no shortage of therapists who accused me of various dysfunctions I didn’t have, all the while overlooking my disability.

Not knowing I had an auditory disorder led me to believe I was dumb. It led me to believe I was an academic fraud, despite my ability to synthesize ideas through reading and writing. I was told on one hand my hearing was normal or typical, but my experiences said otherwise and it was seriously impacting my functioning.

Receiving the diagnosis of auditory processing disorder is one of the most liberating experiences I have ever had. It created context and clarity for my perceptual differences.

Now that I understand how my brain and ears work, I can take effective steps to address my differences.

The label hating critics assert that each learning style should be respected individually. That’s a charming goal, but you have to be able to identify what a style is before you can cater to it. Before my diagnosis I couldn’t understand that I learned differently. I was left to conclude I lacked intelligence. I couldn’t have reached out to an instructor and asked for an accommodation that I didn’t know would benefit me.

Now that I  have a diagnosis I understand myself and my brain like never before. I am embracing my functional deafness and learning American Sign Language. Before my diagnosis I only had the choice of opting out of presentations and lectures, or hearing bits and pieces of what was said. With ASL, I can fully participate where I was never able to before. In smaller groups I can simply ask for people to refrain from speaking over one another. I can ask for acoustically preferential seating because I know it helps me.

Through these mechanisms I regain my voice in forums where I had been silenced.

I get why people don’t like the word disorder. It can be stigmatizing and separating. It can tempt people to divide other humans into the typical and the malignantly disordered and forget that there are millions of experiences in between that should be accepted as part of human diversity.

That is not a problem with the words typical and disordered, but rather a problem with believing in a binary when there is a spectrum. All of human existence is on a spectrum. Many health conditions are on a spectrum. Some require certain medical interventions, some are just diverse ways of presentation that require no medical treatment, only respect for and understanding of our differences.

This issue of labeling is very similar to discussions of descriptions regarding race. All educated people know that race is a social construct, but only the most foolish of us believe it follows from that fact that racism is non-existent. Social constructs matter in the here and now. To assert that society would be better off if we ditched disability labels is analogous to making declarations that we should all be ‘color blind’. It’s naive and hurtful. It is an absurd view embraced only by the most insulated and privileged or the most vicious and demeaning. It rejects the distinct experiences associated with certain ways of experiencing this world.

Other is not bad. Other can be beautiful.

I couldn’t have taken the same position towards my PMDD as I do auditory processing disorder. Believe me, I tried. I tried to accept that I had different moods than many other people for two weeks out of every month. I accepted I was different. But if you accept something that is going to kill you, you may not be stigmatized but you still end up dead. If you have tumor and prefer to think of yourself as ‘experiencing cancer cells’, and reject being labeled a ‘cancer patient’ you probably still die if you opt out of treatment.

Maybe all we need to do is to distinguish between malignant disorders and benign disorders. Until then, I think we should accept that disorders are not necessarily red or blue, and that we are free to vote for purple.