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.

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.

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 Pro-Choice Argument I Never Want to Hear Again

Ultrasound image of fetus in uterus.

 

Last month women marched in Washington DC; in part to maintain their legal right to decide whether people like me should exist.

I will say up front that I think abortion should remain legal in the United States. I know that when it’s been made illegal elsewhere, more human beings die. I think that access to birth control should be free and unlimited, and I’m willing to put my money behind it. But sisters please gather round, because we need to have a talk. Some of the arguments I’ve heard presented on behalf of abortion rights are appalling, and you need to understand why.

I’m disabled and I love who I am. I’m an abuse and neglect survivor, and I love who I am. Despite the difficulties I have faced, and will very likely continue to face, I’m grateful for my life.

The most misguided argument in promotion of the right to legal abortion is what I’ll call the freedom from a life of suffering argument. Sometimes it goes something like this: Abortion shouldn’t be restricted because most unwanted children end up horribly abused and neglected, and there aren’t enough homes for all of them! Other times it goes like this: People with medical condition x have very hard lives. A child with medical condition x would be a burden to me and society. I wouldn’t want my child to have a hard life as a person with medical condition x.

Sounds reasonable right? I mean who is going to step up and argue on behalf of child abuse and neglect or its effects on survivors? Who’s going to promote leading a life with obstacles around every corner?

But the appeals are neither reasonable nor compassionate. They are dehumanizing and debasing. Just because a child is unwanted by his or her biological parents, she or he is by no means doomed to a childhood filled with abuse. Unwanted does not necessarily equal abused. Conversely, a wanted child is by no means guaranteed a life free from abuse or neglect.

Most importantly, even if a child (wanted or unwanted) does end up experiencing abuse or neglect, it is the right of that human being to decide for herself whether life is worth living as a survivor.

The second manifestation of the freedom from a life of suffering argument serves to promote genocide against people with disabilities. It is common knowledge that pre-born people with genetic markers associated with disabilities are frequently aborted.

My mother liked to remind me throughout the course of my childhood that she could have aborted me. The power granted to her by that statement was palpable. It was visceral. I didn’t have to be here. I was only here because of what she presented as her nearly messianic benevolence.

The very fact that I exist today and advocate for disability rights would not be the case if my mother had chosen to hand over the right sum of money to the right doctor.

My mother allowed the men in her life to abuse me. I was homeless as a teen and resorted to prostitution to survive when I was still a minor child. Would I rather have been humanely relieved of this life so that I never had to endure that suffering?

No.

It took me a good deal of time to recover from the abuse I endured as a child and teen. Years of meditation and reflection finally allowed me to see things as they are and were. Temporary. Transient. Non-defining. Traumatic events were experiences I had lived through. The experiences were not me. They were events in time that had not been instigated by me. I was free to choose how my mind responded to them. I was free to live a life that extended beyond those events.

I was not doomed. I have not perpetuated some mythical cycle of abuse. I am a human being who speaks. I am a human being who thinks. I am a human being who loves. I am a human being who matters.

Just because you can’t imagine surviving what I have survived does not make it your moral right to decide for me or anyone else whether they can survive and thrive. Survivors of abuse and people with disabilities are often told horrific things. People say to us, “I’d kill myself if I was deaf/blind/paralyzed…”, “I’d die if that happened to me.” It is this same mentality that drives people to declare that some children should compassionately be spared the burden of existence, because they may endure challenges that seem unfathomable to some.

That I experience disability, marginalization, and abuse survival does not mean that my life is not worth living. It does not mean that I shouldn’t be here to use my voice. It does not mean that I shouldn’t be here to love and lift up others in my community.

Imagine if a woman stood up and recommended gender selective abortion for female embryos based on the argument that women are statistically more likely to encounter adverse life events like rape and discrimination. What if a woman recommended euthanasia for females who had been raped based on the argument that females who have been raped will inevitably suffer.

To stay consistent in our reasoning we might then want to consider the forcible sterilization of all women of childbearing age in all war zones across the globe. Because what kind of future could a child born in a war torn environment have?

Do those ideas strike you as reprehensible? I hope they do. They’re very analogous to the pro-choice freedom from a life of suffering argument.

Child abuse and neglect need to end. There needs to be more support for survivors. Likewise, people with disabilities need support, as every human being needs support. Nothing about my disability reduces my humanity.

Even though abuse and neglect persist, a person cannot reasonably consider themselves to be moral if they believe they can decide for me that I shouldn’t be here because I’m a survivor of crimes perpetrated against me or because I live with disabilities. If women have compassion, then they must recognize that it is not within their moral power to determine whether another human being who poses no threat to them has the right to be on this planet. If my life isn’t a threat to yours, I have just as much a right to be here as you do.

I believe that everyone has the right to be here. Every single one of us. Disabled and able, of different sexual orientations, of different genders, all ethnicities, all religious affiliations, no religious affiliations, and of all nationalities. All of us have a right to exist and a right to self-determination. We have a right to love each other, support each other in our struggles and hold each other accountable for our errors. We have a right to basic necessities like food, water and health care.

I’m not looking to change laws, I’m looking to change the conversation. I think there are some circumstances where abortion is absolutely a moral choice. But the appeal to freedom from a life of suffering argument needs to be examined and discarded, because if lives like mine aren’t respected, then the conversation is in no way liberating, empathetic, pro-woman, or inclusive.

 

Research Uncovers Possible Mechanisms behind PMDD

Survivors of PMDD, their families, and in some cases their health care providers welcomed news this week that research has revealed possible mechanisms behind the disorder. It is my hope that this research will encourage even more investigation into the hows and whys of PMDD, so that more effective non surgical treatments may someday be available to women who want to live a life unfettered by the agony produced by a maladaptive reaction to hormones.

While this research vindicates the subjective reports of those afflicted by PMDD, we still have work to do. This information must be distributed so that understanding of PMDD grows. Once broader society and the medical community reach a point of greater understanding, it will be more likely that women with PMDD will be taken seriously.

PMDD is a serious medical concern that merits serious medical treatment. Now we have research on our side.

 

 

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.