Are You Aware? Expanding Perspectives
This is part VII in our Awareness Wednesday series on disability. Read the other posts in the series here.
I have a host of medical diagnoses — a list of acronyms that likely won’t mean anything to most people. Some include POTS, MCAD, probable EDS, IBS, GERD, ME, mito, hypokPP, DSPD, PTSD, chiari, hyperPT… honestly, I don’t keep a running tally anywhere, so it’s hard to keep track of all of them.
In plain English, I have a glitchy nervous system, low stamina, sagging brain, gimp leg, migraines, PTSD, allergies, and other conditions, all very complicated, most interconnected, few treatable, and most beyond the knowledge of the average doctor. I also suspect I am on the autism spectrum. My experiences with my health have taught me a number of lessons and forced me to come to terms with the realities of my life. I would like to share some of those insights with you.
Difficulties in Obtaining a Diagnosis
It is estimated that as many as one in 13 Americans are living with rare, undiagnosed medical conditions. And it can be many years before some people eventually get a diagnosis.
I have been diagnosed with a type of dysautonomia, a condition that affects the autonomic (involuntary) nervous system. Postural orthostatic tachycardia syndrome, or POTS, is a type of dysautonomia that impacts many systems and functions in the body but is distinctive for how it affects the heart rate and circulation. People with various forms of dysautonomia, particularly POTS, routinely get misdiagnosed because the symptoms can be identical to anxiety, but with a totally different root cause.
Most doctors get very little training on many lesser-known illnesses and are taught to accept the most obvious answers. So, as the saying goes, they expect horses when they hear hoofbeats. Yet there are “zebras” and other hoofed possibilities that are never considered. It can take years to find doctors who have the necessary knowledge — and an inclination to look past the obvious — before receiving a diagnosis, let alone effective treatment. And few doctors consider things beyond their expertise.
This is probably why the Mayo neurologist wrote “functional” (which my primary care doctor interpreted to mean psychological) when no neurological tests could explain why my leg stops working at times. Years later I learned it happens when my potassium drops. It’s a mechanism that has nothing to do with neurology, even though it’s easy to assume it would. That assumption led to medical advice that has permanently damaged my leg.
Male Bias in Medicine
Medicine, by and large, has been built upon a foundation of men studying male bodies, with male assumptions. Over the centuries, this has created serious repercussions for women seeking medical treatment. “Rather than try to learn about female sexuality, male doctors propagated beliefs that women were incomplete, imperfect versions of men, who, because of this imperfection, suffered greatly from their sexuality.”
For hundreds of years, men sought to explain away the differences in women’s health by blaming the female reproductive system. The term “hysteria” was categorized as an actual disease (and then psychological disorder), the symptoms of which were what we recognize now as normal functioning female biology. In some severe cases, treatment may have consisted of women being forced to have a hysterectomy (see the relationship?), or even put into an asylum.
Although we have come a long way, there is still a lot of bias in medicine. For instance, women’s pain is often undertreated, or dismissed as “emotional” or “psychosomatic.” Women are seven times more likely than men to be sent home from the ER while experiencing a heart attack. This is due to the frequent failure to recognize that women often present different symptoms during a heart attack, or even failure to recognize that women have heart attacks in the first place.
Approximately one in 10 women develop endometriosis during their reproductive years, and yet, it takes, on average, 10 to 12 years after symptoms appear to be correctly diagnosed. Did you know that in the U.S., around 700 women die each year from complications during pregnancy or childbirth, and about 60% of those deaths are deemed preventable? And women frequently have to visit more doctors than men before receiving a diagnosis. That can mean the difference between life and death, as an estimated 40,000 to 80,000 people die each year as the result of diagnostic errors in the U.S. (As a side note, these issues are more even troubling in terms of health outcomes for black women).
Disabled Persons Don’t Need to Be “Fixed”
As frustrating as it can be to work with doctors and their limited knowledge, it is even more frustrating when people with no medical knowledge try to “fix me.” Some are innocently trying to be helpful. They listen when I state my boundaries. Some see me as an easy target.
I have had many people believe that their perspective of privilege (healthy, married, well off, etc.) means they know what is best for me, and that I am obligated to submit to their dictates. This tells me they believe I am not acceptable as I am. A number of them will couch their approach to me with flowery language, declaring how God loves me, and that I have so much potential and they just want to make sure I reach it. This is manipulative. These same people, who don’t accept my boundaries, have even retaliated when I have resisted their demands.
Others condemn me for accepting that there are no medical cures or answers concerning my ailments at this point in time. I’m no longer beating myself up or wasting my limited energy chasing non-existent cures. It took me over a year to finally accept that I was not going to get better. The very first time I said that out loud to a supposed friend, I was told I had a dark aura. They said that deep down I wanted to be sick, and that I would get better when I finally decided I wanted to be better.
Some, imagining they are being helpful, print out articles about “conversion disorder” and “psychosomatic” illnesses. This is not helpful. Likewise, lazy doctors often insist I am just depressed or have anxiety and need medication to treat that. This is particularly difficult for me because my abusive parents constantly tried to force me to take psychotropic medicines as a child, wanting to control me, and I have PTSD as a result of the abuse. Doctors insisting I take such medications trigger that PTSD. (I was a good and quiet child. Such medications were totally unwarranted. They were also extremely dangerous.)
Then there are the people who have a favorite alternative therapy they think I should try. While I do take specific supplements (that trial and error have shown helpful), I’m not interested in foot zoning, or energy work, or the miracle gut cure, or a particular exercise regime or diet.
Having post-exertional neuroimmune exhaustion (PENE) means all extended exertion — including exercise — literally harms my health; for example, the mental energy to put all this together may cost me a week of minimal functioning and minimal coherence. The more I keep entering PENE, the more permanent the damage becomes. I’m also supposed to get large quantities of sodium, but I’m too sick to be a five-star, all-natural, nutritionist chef. I barely have enough energy to survive as is. And I have none to spare.
If you want to help, ask what helps. And please don’t disappear on us if what we tell you we need is more than you want, or are able, to give. If you can’t provide that help, then let ward leadership know of the need so it gets addressed. Don’t just abandon us when our realities get uncomfortable for you.
Autism Insights
I believe I am autistic. First, it is important to know that autism is one of those things that is not always easy to diagnose. Also worth noting is the fact that it is notoriously difficult for women to be diagnosed with autism.
Based on personal experience and my own research, I share many traits commonly associated with autism. I also experience the world in ways similar to those reported by individuals who are on the autism spectrum. And by spectrum, don’t think of it like it runs from “able” to “not able” — think three-dimensional bell curve.
It is commonly assumed that autistic people don’t feel or perhaps understand empathy. Studies have shown this to be incorrect. One explanation for this assumption is the theory of the “double empathy problem.” The double empathy problem, in summary, states that when people experience the world in very different ways, they can struggle to empathize with one another. In this case, the difference in the way an autistic person experiences the world, and the way a non-autistic person experiences the world, can create a gap in understanding. Studies have shown that “… in experimental conditions, non-autistic people struggled to read the emotions of autistic participants, or form negative first impressions of autistic people. Such evidence would suggest that the dominant psychological theories of autism are partial explanations at best.
“According to the theory of the ‘double empathy problem’, these issues are not due to autistic cognition alone, but a breakdown in reciprocity and mutual understanding that can happen between people with very differing ways of experiencing the world. If one has ever experienced a conversation with someone who one does not share a first language with, or even an interest in the topic of a conversation, one may experience something similar.“
Non-auties rely heavily on body language to read implied subtext, whereas auties are usually intensely focused on the actual words communicated and there is often a disconnect between what an autie verbally expresses (their actual intended communication) and what their bodies may or may not be doing. Non-auties seeing this disconnect read it as disingenuous. It can create an uncanny valley effect (aversion to things that feel almost human, but not quite) that is off-putting because they are assuming the body language and the words should match. Meanwhile, auties get frustrated when the words people use turn out not to be what the non-auties meant at all. Hence the double empathy problem. Each side processes and interprets the world in different ways, and that interferes with cross-communication and mutual understanding. I, and many auties I’ve read, have excess empathy, so we have to shut it out on some level to avoid total overwhelm. Of course, this can be totally misread by the general population.
It is also interesting to note that people with autism don’t usually experience the uncanny valley effect when associating with other people. While some may see the lack of the uncanny valley effect in auties as a flaw, I think it helps explain the excess of empathy often found in autism. Autistic people don’t have that natural alienation response as prevalently in their wiring. This does mean they can be more easily taken advantage of, because there isn’t the automatic stranger-danger wariness, but it also means they may be able to cross intersectional boundaries more easily. At times like this, that instinct could be used for great positive effect. These are things that I can associate with.
I’ve always loved reading. Stories feed my soul. God uses stories to explain the world to me. People never made any sense to me, but I discovered that when real-life people don’t or can’t explain what they are thinking or why they act in certain ways, stories can help illuminate that information. Now, I feel as if I have the ability to explain to others why people behave as they do. I believe one of the reasons my therapist resists seeing me as autistic is because I’ve spent my whole life making that weakness a super strength as a way of surviving. This quality, referred to as camouflaging or masking, is another trait of people with neurological differences, particularly women, used to compensate and fit in with the population at large. This effort, in itself, can cause exhaustion or overwhelm for those who employ it. Chronic exhaustion and other health-related impediments have stood in the way of my ability to seek further exploration and a diagnosis from other medical and mental health professionals.
Be Careful of Assumptions
People are often quick to judge and come to conclusions. These often prove to be inaccurate. Assumptions made by those without disabilities can often cause harm to those with disabilities. I have experienced some of this myself.
I would like people to know that not all wheelchair users are unable to walk. Not all illnesses are “always on.” Some people with POTS can go jogging one day and be stuck in bed another. Sometimes we can anticipate cause and effect, sometimes we can’t. I can know I have an appointment scheduled for next week and rest up, hoping for better functioning, and still feel terrible on the appointed day — even doing my best to manage my health. There are a lot of promises and guarantees I won’t make because I have none myself.
I would like people to know disability can affect the clothing people are able to wear. Because my regulating (autonomic) nervous system doesn’t work as it should, I overheat very easily. That triggers other symptoms. And it’s not easy for me to cool down. Since I live alone, I have more flexibility in what I wear at home. But when I must be “modestly covered,” the tops that cover my garments also cover my neck, back, and shoulder areas, which don’t properly regulate themselves. So, I’m left with a near-impossible choice between what is acceptable in our religious community, and dressing in ways that don’t seriously affect my health. The only sort of solution I’ve found so far are sundresses with lace shoulders that breathe, but even those can be too much on some days. I often feel desperate, waiting for people to leave so I can strip down and cool off again. And I’ve had to ask lady visitors to deal with tank tops when I can’t handle more. The total lack of willingness to converse about this issue by leadership, in my experience, means I’m left doing as I have been doing, or just giving up on what has become commonly accepted as “modest.”
I would like for people to be less judgmental of those who use food stamps, and more flexible with their preconceived notions of what foods ought to be included. I am speaking to this based on public comments I’ve seen over the years. Many resent that those on food stamps are allowed to buy almost any food option available (except already prepared, deli-type items). They also think all foods deemed not essential to basic nutrition should be disallowed. No treats. Nothing “exotic.” Nothing “extra.” I think such people have never been to a bishops’ storehouse, for, even they have cake mixes, ice cream, and puddings. And they must not have had to live on storehouse food for years, either. When I finally thought to look into food stamps, a card was expedited to me when they learned I had no money and hadn’t for years. It seemed like a ton of money for someone who had lived on $10 of food a week for years. So I started trying different things. Everything was “extra” to me. For at least a decade previous, I had noticed pigmentation problems with my hair. My hair had become pale and almost translucent. And do you know what happened? Once I had access to a variety of nutritional foods and adequate calories, pigment came back to my hair. Now I am able to use that fact to shut down some of these negative conversations I see online.
I would like people to be more sensitive to the privacy of people with disabilities. Our disabilities, visible or not, are not an invitation to ask about personal medical information. I may give you a brief explanation if you ask, and conversation on the topic is more likely if I develop a relationship with you. But if someone with a disability says they don’t want to talk about it, please respect that boundary and move on.
Self-Reliance as a False God
Our American and LDS personalities often idealize the self-reliant individual. By default, that means those unable to be physically self-reliant are often stigmatized. This plays out in much higher levels of rejection than people — wanting to identify themselves as charitable — would believe. This can leave disabled individuals in a perilous position. And when we try to speak up about such problems, it can get vicious. You can see it in statements by some on the far right, that elderly, and sick, and indigent populations can be sacrificed for the convenience and wellbeing of those who actually “contribute to society.” Because, somehow, only monetary contributions are considered valuable in this paradigm. “The economy,” when it is declared as the greatest concern for our country, has become a modern false god for some that demands the sacrifice of the vulnerable. (On a personal note, I am happy to sacrifice myself to COVID if we can finally face down racism once and for all. I’m just not willing to be sacrificed for an abstract bank account.)
Did you know that government assistance is made intentionally difficult to receive? This is to discourage presumed fraud. Fraud is often pronounced from media rooftops as the primary excuse to deny government assistance. The “welfare queen” concept was a politically motivated tactic employed by the Reagan administration to turn political mid-liners against the more socially liberal. But it was an extreme and totally misrepresentative case that was used to justify their policies. Decades later, all this political antagonism has added up to difficult demands required in the application process being asked of those least capable of meeting them. It saves money by keeping it out of reach for many in need, but it also increases the poverty and insecurity of an incredibly vulnerable population.
The fixation on self-reliance usually fails to recognize how much each individual contributes to societal wellbeing. While I require government assistance to survive, I am able to lay in bed and share messages and insight to help bolster a few dozen abuse victims in the support group I run on Facebook. I know that has made a real difference in some of the members’ lives. My unique perspective also helps me recognize important things to share and bring awareness to in my regular social media presence. I can do that in bed when my head is clear enough to focus. Limiting “self-reliance” to financial and social independence unfairly punishes and shortchanges the divine worth of those with other gifts to offer.
Faith Not to Be Healed
In March of 2013, Elder Bednar delivered a talk at a fireside in Arlington, Texas. In it, he spoke of having “faith not to be healed.”
“Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer… And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.
“Even with strong faith, many mountains will not be moved. And not all of the sick and infirmed will be healed. If all opposition were curtailed, if all maladies were removed, then the primary purposes of the Father’s plan would be frustrated.“
Not all of us are meant to be cured in this life. That doesn’t mean our faith is failing. It actually means we have enough faith to accept the hard things that life often brings. That is part of the childlike submissiveness encouraged in the Book of Mormon, and it demonstrates great faith. At the same time, giving voice to problems, pain, and sorrow is not a lack of faith to be condemned. As we often sing in church: “He lives to hear my soul’s complaint.”
While many of us have adjusted to our lives far better than anyone might imagine possible, disabilities are still burdens that can weigh us down. We have as much right as everyone else to acknowledge that reality out loud. I am specifically thinking of how often, when deceased disabled people are eulogized, they get praised because “they never complained.” Really? They never cried because the pain was overwhelming? They never got distressed because their needs weren’t being listened to? They didn’t have bad days like everyone else? This is a concerning ideal where disabled people are often held to a higher standard than those who are not disabled.
This comes across as praising them for not being a burden; not letting our existence bother the healthy people. Having been a caregiver to a demanding individual, I know how hard it can be. It requires community support and self-care and healthy boundaries. But this should not lead us to resent, punish, or condemn the disabled for existing in a way a healthy person might find inconvenient to their expectations.
Simplified Expectations and a Slower Life
I think a lot of people have had a chance to discover, thanks to the COVID shutdown, that a slower pace of life can be healthier and more sustainable than a life constantly on the go. A lot of things that are thought to be necessities really aren’t. Disability usually forces people to accept that perspective. We literally cannot maintain the normal way of functioning. I’m hoping COVID social effects help change things for the better for disabled people in the long run. For example, empathy for the effects of long-term isolation on people’s wellbeing. And work- and school-from-home options that were previously considered too inconvenient before are suddenly available. Now that everyone else needs it, that excuse should no longer stand.
All in all, it should be understandable that Mosiah 4:27 is a theme scripture for my life: “And see that all these things are done in wisdom and order; for it is not requisite that a man should run faster than he has strength. And again, it is expedient that he should be diligent, that thereby he might win the prize; therefore, all things must be done in order.”
Katie Dyer has studied English, theater, and history, and she runs a Facebook support group for victims of abuse. She has enjoyed being a member of Mormon Women for Ethical Government for several years and appreciates the dialogue on ethical government. She is a thinker and lover of stories. And she really likes plants. And space. And chocolate.
