Stop Pawning Our Other Illnesses Off As Mental Illness Because You Don’t Feel Like Doing Your Job

My partner has been sick. My kind of sick, unfortunately. The kind that has ups and downs, but that doesn’t really get “better”. The kind that is probably “managed”, but not cured. I say probably in that last sentence because he does not have a definitive diagnosis yet. He has some diagnoses — but not one that explains everything. I have been watching him slowly fall apart for at least a couple of years now, and I am worried and scared. But I am also angry because it is taking so long for him to get a diagnosis, because people aren’t taking him seriously, because I’m watching him go through what I and so many others have gone through ( and am still going through now in some ways), and because most people don’t seem to care — and even when they do, it still takes forever.

Part of why I am so scared is having experienced a ton of problems, indifference, and discrimination at the hands of the medical industry. But part is because he has so many of the symptoms I had when I got sick. I have several chronic illnesses, but one of them is extremely rare. The odds are astronomically against both him and I having it. However, I have a theory that it is an illness often caused by (or sparked off  by) stress and/or overexertion. I am not any form of medical professional nor a scientist, and I have no proof — it’s just a theory. But if my theory is correct, it makes a lot more sense why we would both have it, despite the odds against it.

He may not have the same illness that I do. But he has so many of the same symptoms. Unfortunately, the symptoms are nonspecific (as they are with many illnesses). While it’s possible that he may have something else (and part of me hopes he does — but part off me doesn’t because I’m afraid it might be something even worse), I am exceedingly frustrated that doctors are dragging their feet over doing the definitive test for it.

He went to a specialist the other day. For the purposes of this blog post, this doctor will be “specialist 2”, even though he has seen other specialists. He was referred to specialist 2 by another specialist, one who is treating a primary chronic illness of his. For this post, they will be “specialist 1”. Let me back up here and mention that he and I have several of the same doctors due mostly to having similar but different government insurance, the difficulty of getting to many doctors for us, living in the same area, having the same primary care doctor, and sometimes recommending doctors to each other or warning each other away from other doctors.

My first doctor who filled the role of “specialist 1” was terrible. I went to see my second specialist of the same type who was very good, as these types of specialists go. That was five years ago now, maybe more. They are far away and difficult to get to. About a year or two ago, he went to see his own specialist of that type. They were better than my first, but nowhere near as good as my second. I tried to get him to go see mine, but he didn’t want to because of the difficulty and expense of traveling there. Finally he gave it after getting only partial beneficial results from his specialist. But by this time, my good specialist had retired and been replaced by another who was still better than his or my first specialist, but not as good as my second. We both have diagnosed illnesses that require seeing a specialist of that type, and so we both see this same doctor — specialist 1.

But she does not believe that he has the same illness I have, in addition to his other illness. It’s possible he doesn’t, but if he doesn’t he has something that presents very, very similarly. So she sent him to see specialist 2, who will also become my specialist 2, because she does not believe the medications I take are having the effect on me that I believe they are.

I went back with him when he went to see specialist 2 to provide moral support and to help advocate for him. Specialist 2 wants him to see another specialist, and also a psychiatrist. They wanted him to see a psychiatrist because they asked if he had any depression or anxiety, and he said yes. He said yes because he forgot how badly it goes when you disclose any mental illness — or even history of it to doctors. He forgot because he is so sick and his memory is affected that badly. Now, I am not saying that people shouldn’t disclose to their doctors, and sometimes it is necessary. I have heard and observed the phenomena of doctors not taking people seriously when they disclose mental illness, but I am not speaking for the experience of everyone. I am only speaking for myself, and also in this instance, broadly for my partner, with his explicit consent.

It has been my experience — and his — that once a mental illness or history of it is disclosed, medical professionals stop taking any other illnesses seriously. This happens sometimes even without disclosure of mental illness — as when our primary care doctor suggested that I might have depression when my symptoms were mystifying everyone, or when my previous (bad) specialist suggested that I have might have a particular mental illness when I was describing symptoms to him — it turned out that I was on extremely insufficient doses of medicine under his care. But it is especially a prevalent occurrence when mental illness or a history of it is disclosed.

Suddenly every illness, every symptom is a symptom of  a mental illness. And I don’t dispute that mental illnesses — including some of those that my partner and I have — can cause some of the symptoms of our other illnesses. But they do not cause all of them. And, as I mentioned, since the symptoms of many of our illnesses are nonspecific — many other illnesses than mental illnesses can cause those symptoms, too. Even more importantly, having had mental illnesses for all of our lives, we are familiar intimately with how they present in us. Furthermore, those presentations are not likely to change without a reason. 

Regardless, depression and anxiety are not causing him to lose weight, be dizzy, frequently nearly fall down, have extreme fatigue coupled with even more extreme memory problems and trouble concentrating. They are not making him nauseous, not making him vomit or have diarrhea, they do not give him daily headaches and make him feel as though he’s been punched in the eye. They are not taking away his appetite and his libido. They are not causing him to not only lose interest in his hobbies and the things that are most important to him, but sapping every ounce of energy that he has to do those things. They have not turned a previously light sleeper into someone who has to be called and often shaken for five to ten minutes to wake up, or someone who used to wake up and be groggy for an hour or two into someone who has to try for an hour or five to wake up and then is groggy all but the last four-to-six hours of the day. As I mentioned earlier, I don’t dispute that many mental illnesses can cause a lot of these symptoms, but as I also stated, they either were not prone to causing them in him at all, or they presented very differently when they did — and that is a crucial distinction to make. When I pointed out that it was not depression or anxiety causing the issues, but something else, the doctor said, “well, sometimes it can be both, you know?”

If my partner chooses not to see a psychiatrist, he will probably be labeled non-compliant and blamed for any medical issues he has because doctors believe it could be due to mental illness, which he does not want treatment for because he has historically been better able to handle is mental illnesses on his own (which in no way implies that is the best method for everyone) and because he knows it is not due to mental illness. I am afraid — I fear legitimately — that his doctors will not investigate other alternatives, or only investigate them halfheartedly.

So, yeah, I am worried, scared, and angry. Actually, I am enraged. I feel helpless. And for the sake of my partner, for my own sake, for the sake of everyone who has a mental illness and other illnesses or disabilities, I am terrified.

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I Do Not Have Bootstraps

Content Warning for: severe ableism, internalized ableism, sanism and internalized sanism, micro-agressions, macro-aggressions, institutionalized oppression,, institutionalized discrimination, societal scapegoating, emotional abuse, erasure, lack of goodness of fit, mental illnesses, other chronic illnesses, neuro-diversity, ableist language.

I grew up hearing, “everybody feels a little down sometimes,” and “nobody feels like doing things sometimes,” and a myriad of other phrases, followed by, “but you just have to pull yourself up by your bootstraps”.

I am here to tell you, I do not have bootstraps. Many people don’t.

Also, mental illnesses are emphatically not the same as, “feeling a little down sometimes.” Executive dysfunction is not the same as laziness (believe me, I am sometimes lazy — but I also have executive dysfunction and they are not the same) even though it is often mistaken for laziness.

Telling someone who has depression, Borderline Personality Disorder, or a host of other mental illnesses to “pull themselves up by their bootstraps” is like telling someone who is legally blind to just focus and if they really apply themselves, they’ll be able to read that tiny sign across the street.

Telling someone with executive dysfunction and/or a chronic illness and/or a learning disability that that they are lazy and just not trying is like telling the person with diabetes who is currently hypoglycemic that their dizziness, fear, panic, paranoia, slurred speech, and complete inability to form a coherent thought are because they just aren’t trying hard enough.

I have had enough of that.

I grew up hearing, “you and [x person] will be dead by the time you’re [18, 20, 21, 23, 25, 27, 30].

I grew up hearing that I could live and function like a normal person in society, if only I just “applied myself”. Sometimes, but not always, I was told that I could do this “with a little help”. Sometimes I was told that I would always need help, others that I wasn’t. I was also told that the person I lived with could not live on his own, someimes without help and sometimes at all.

I was told that if we could not manage this, we should “be comitted,” that we should live in a group home or a mental hospital or a nursing home for the rest of our lives.

I was told that we were lazy, crazy, greedy, selfish, entitled.

I was told in ways large and small, in so many words and in less words with heavy implications that productivity and blending in is the measure of a person — that a person who works a day job that is socially sanctioned by society and considered “real” work has value and a person who does not and people who can not do have value. I was told and shown that they do not deserve dignity, respect, or any sembelance of pleasure. I was told and shown that looking and sounding just like everyone else was the most important thing, that what society approves of is good and right, regardless of whether or not it is and that the goal must be to fit in and pass for normal — if I didn’t, it was my fault, I was a failure, and I deserved the mistreatment that I got.

No more.

The people who believed these things will not stop believing them, and I cannot make them, though I can try (but I have found it over many years to be an exercise in futility and frustration). And it will take me perhaps a lifetime to undo the damage and internalized ableism these beliefs caused. But I can dispute these beliefs. I can fight them in my own head and by disagreeing with those who hold them whenever I have the energy to.

I can call a spade a spade. These thoughts and beliefs are emotional abuse. This abuse is sanctioned by society and so takes place on societal scale.

I am not willing to accept being the scapegoat so the self-righteous can stroke their egos. No more.

I dispute these erroneous beliefs.

Special thanks to my transgender* community, especially where it intersects with the disabilty rights community and also to my Gods, especially Loki, for helping me begin to see how much ableism I have internalized — despite inherently feeling how wrong it was and spending much of my life fighting it every step of the way. Thank you, and thank You, a million times thank you and thank You.

Denied

Content Warning for: dealing medical insurance, insurance denials, suicidal ideation, chronic pain, agonizing pain, disability, chronic illness, anger, rage, violence (in the form of thoughts), micro-aggressions, the medical-industrial complex, and classism.

In the past year or two, my insurance has denied coverage for:

  • A chest x-ray to diagnose chronic pain
  • An MRI of my spine to diagnose chronic pain
  • A deep cleaning of my teeth
  • An abdominal ultrasound to diagnose cramping and pain

These are only the things I remember. I know there are others I can’t think of at the moment. These are important tests and procedures. Every time I get a denial notice I want to scream and cry. Every time a doctor sends me to another specialist or for more tests, I wait with bated breath in case my insurance denies coverage. When I am lying in bed, writhing and sobbing, marshaling every last ounce of self-control and willpower I have to not kill myself just to end the agonizing pain, I want to hit the people who denied me coverage, I want to go on a rampage, tearing at the skin of all the apathetic doctors, of the greedy high-up pharmaceutical and insurance bigwigs. I won’t. In my saner, more level-headed moments, when my better nature wins out, I never want anyone to be in any pain — not even my enemies. I didn’t want that to begin with, but since getting sick, in the daily course of my life, I feel even more strongly that I don’t want anyone to be in pain because I know what it’s like to have pain be a constant factor, and I can empathize even more than I used to because of that. But in those moments of pain, terror, and despair, I want everyone who has ever caused pain to anyone to feel constant torture, to be in the pain I’m in, the pain anyone who is sick, or hurting, or depressed, or terrified is in — to feel it magnified and drawn out over the course of years. It is not kind of me. It is not charitable. And I generally try to live my life without hurting others (though, being human, I mess up, as we all do). I much prefer myself in the moments when I don’t want anyone to hurt, ever. And even though the system is my enemy, capitalism is my enemy, so many “-isms” and “-phobias” are my enemies, the corporate culture is my enemy, and there are times when I feel like these millionaires and billionaires who run things are my enemy — regular people who are just trying to live their lives without causing harm are not my enemy. And the millionaires and billionaires who run these corporations and businesses, and who make all these rules and regulations, almost certainly don’t consider themselves my enemy, even if I consider them mine. That would be like me calling the blade of grass I accidentally crush under my foot when I walk my enemy. The difference may be that I generally feel bad when I crush grass, maybe because of empathy, maybe because I’m an animist, maybe because of an affinity for the natural world. But do I really notice and feel guilty every single time I break a blade of grass? And who I am I to decide that the wealthy people who run things don’t feel guilty? I doubt they do, but I’m not in their heads, so I can’t say for sure. Sometimes their actions seem to strongly imply they don’t, however, such as massively jacking up the cost of a prescription drug that already costs many, many times the amount it takes to manufacture it.

There is so much more I have to say on the subject, and on similar subjects, but it’s hit the part of the day where I’m no longer at my thinking peak and brain fog is winning, so I’m going to stop for now and publish this, otherwise I’m afraid I’ll have another unfinished draft sitting around forever.

Quote of the Day

“Even though there are a lot of other

Important issues in the world

I refuse to let another day pass in which

I demean or shadow the things

Directly related to me

’cause there’s nobody else who’ll do it”  — Clint Catalyst, Cottonmouth Kisses

Tiny Steps

I very much so do not feel like doing this. My Executive Function Disorder (which may just be a symptom of my Autism Spectrum Disorder, or its own separate thing) is kicking my butt. I don’t want to be writing now (even though it’s CampNaNoWriMo, even though I’m taking part in a writing challenge to write at least a certain number of days this year, even though I have a personal word count goal I’m trying to meet this year, even though I often love to write, even though I identify myself as a writer before anything else — and it’s one of the few aspects of my identity I am almost always sure of, and even though I strongly feel I have a religious obligation to my Gods and Holy Powers to write) or doing anything else productive, really. But I had a dream a couple of nights ago that seemed like a not so subtle hint/ maybe warning, and I have felt profoundly guilty because I know there are things I feel like I should be doing and sometimes that O/others think I should be doing, but I haven’t been. And I’m ashamed and embarrassed and dismayed by it, as well as overwhelmed.

But even though I feel like I should be doing so much more, maybe a blog post explaining that I feel like I can’t do so much more is something helpful. It’s a start, anyway, and I think it’s moving in the right direction.

I get so overwhelmed, so easily. I often can’t put tasks in their proper order. I often don’t even know where or how to begin. I have trouble prioritizing tasks. I often have trouble starting tasks, and sometimes I have trouble finishing them.

It’s not only my executive function disorder that causes problems. This is compounded by so many other things — which is not to say executive function disorder is easy to have, or any picnic on it’s own, because it’s not. My Autism spectrum disorder makes things difficult all on it’s own, though right now I think that’s the least of my problems. But it does come with executive function disorder as a part of it. It also generally makes it difficult for me to process things. It also means I get overstimulated easily.  I just now sighed to myself because it occurred to me that people who don’t know what a lot of these things are — like executive function disorder and overstimulation — are going to have no idea what I’m talking about, and some of them will almost definitely just think I need to try harder. And to a certain extent, I do need to try harder, but that isn’t always possible. I also feel bad because I know it’s hard to parse what people are saying when they use a lot of unfamiliar terminology. And because if I don’t explain, it won’t help with either people who are unfamiliar with the concepts understanding what I’m saying, nor with helping to tear down that dangerous and harmful “try harder” concept that society loves to throw onto people who are often not capable of it. But I just don’t have it in me to explain right now. I’d have to stop every sentence or even every few words. And while it’s getting easier to write as I continue to, for the most part, I just don’t have it in me to come up with definitions or metaphors right now. It’s hard enough just to write this. So if you are unfamiliar with words, phrases, or concepts that I’m using, search engines are your friends. And please bear in mind that while some words do mean exactly what they sound like, like “overstimulated,” for example, they can take on a whole depth of meaning, or sometimes separate meaning within a specific context — such as Autism.

Anyway, back to where I was. I have lots of mental health and other health illnesses and issues, among other things, and they can all compound each other. For instance, my executive dysfunction is made much more difficult because I have several chronic illness, and one in particular causes me a great deal of exhaustion all the time. It also affects my memory, my focus and concentration, my strength, and my endurance. It causes chronic pain, probably along with another as of now currently undiagnosed chronic illness. So if I even get past the executive dysfunction temporarily, I am easily exhausted and not able to apply sufficient amounts of brain or body power to whatever I need do. And it makes it that much harder to start in the first place.

On top of that, I have extreme generalized anxiety, worse social anxiety, and, in the last two or three years, I’ve developed agoraphobia, the latter of which is something I never had to contend with before. My Autism makes social cues hard to read, and stacks with the social anxiety. The Autism and the chronic illness both make social interactions hard to follow and concentrate on, and the illness makes both them and traveling hard. I cover my head for a combination of religious and modesty reasons and at home I frequently wear pajamas for comfort, warmth, and because I need to lie down a lot. So  most of the time that something I have to do involves talking to people or leaving the house I feel like I need to overcome insurmountable odds before even factoring in executive function disorder. Then I also have to cover my head and usually change my clothes.

I don’t drive, so I almost always travel by bus. I occasionally walk places or get rides from people I know. But I know few people with cars and most of them don’t live near me, and I can’t usually walk far due to fatigue, muscle weakness, and chronic pain.

Even now, there is so much more I want to say on the subject, but an amalgam of things are making it hard for me to push past everything and keep writing. As it is, this has already taken me writing over the course of three spread out days to get this far, and I’m afraid it’s too long as it is. And I’m afraid that if I don’t publish it soon, I won’t ever — so I’m going to publish it as it stands.

It’s Not Political if It’s Your Life — Part 1

Or, at least, for some people it isn’t political if it’s your life.

I’m transgender. I can’t use what is the right bathroom for me, even though most of society is convinced I’m using the “right” bathroom, even though it’s the wrong one. If I’m able to medically transition, there will be a period of time when the issue is more complicated. In my past, it was more complicated when I was better able to “pass”. People gave me odd and sometimes dirty looks, because they either couldn’t tell my gender or thought that I was male. But I never passed well enough to just use the men’s restroom as a matter of course. Usually people took me for a butch lesbian or sometimes a teenage boy — until I opened my mouth, or until they saw my hands. I’d rather be read as a butch lesbian woman than as a straight femme woman, and in fact, that’s how I identified for a while before I knew that being transgender is a thing and before I knew I was pansexual. But it isn’t who I am — I’m not a woman at all — and I shouldn’t be using the women’s restroom. I shouldn’t have to.

But let’s say for a minute that I’m not transgender. Let’s say that I’m actually the woman I appear to be to most of society. I live with two other people who are gender variant, but who both look like what our society considers men to look like and they are read as men unless they specify otherwise, or we are in a specifically trans*/Gender diverse/nonbinary environment, and often even then. My few “friends” are actually friends of one of my partners, not my friends, and only one of them is read as a woman and they live states away. The others are read as men, and most of them are men. The only relative I see frequently is a man. The two female relatives I have who live relatively close to me (by which I mean in the next state over) I see very infrequently — once every three years is usually a lot. Why does this matter?

It matters because I can’t always go to the bathroom without assistance. Sometimes I am incredibly dizzy and/or lightheaded and leaning on the bars in the wheelchair accessible stalls is not always enough. Not to mention that the bars are sometimes broken, covered with toilet paper, or non-existant. Not to mention there is often a whole lot of ground between the rest room door, the sinks, and the stalls. I do have mobility devices for when I need them, but they are not always enough and sometimes problems can come upon me unexpectedly while I’m out. Additionally, plenty of “wheelchair accessible” rest rooms really are not wheelchair accessible at all. They are often too small, the doors open the wrong way, and there is not enough room to turn around or transfer (move out of the chair and onto the toilet seat and back). Not to mention sometimes the wheelchair accessible stalls are clogged or have broken locks. This happens with the regular stalls  too, but it’s more of a problem when it’s the only stall you can use. I also have visio-spatial issures, so steering my chair is difficult sometimes, escpecially in cramped spaces. I am very, very fortunate that I am generally able to walk and don’t need to use my chair all the time, but I’ve still gotten stuck in rest room stalls more than once. When I was a teenager, my mother would help my step-father’s mother in the rest room, bu that isn’t an option for me. So sometimes, the only thing keeping me from falling and cracking my head open in the rest room is someone helping me. And society considers me female and the people who can help me male, which means we can’t use the same bathroom unless it is one of the few places that has a single stall bathroom. There are many, many people who need assistance in the rest room and don’t have someone of the same gender to help them. This would be a problem whether I was trangender or not.

But I am transgender. Back when I “passed” better, I got odd and sometimes dirty looks for using the women’s rest room. But I didn’t generally dare use the mens. Now I still get those looks sometimes, particularly since I started shaving my head again, and especially when I’m wearing my binder with particularly baggy clothing, but I’m mostly curvy enough these days that people assume I’m female. So aside from dysphoria and chronic illness related issues, I can generally just use the women’s bathroom. But I don’t want to minimize those things. I already talked about the latter somewhat. But dysphoria can be so bad that many people (including me) don’t always use the bathroom when they need to and hold it instead (which I’ve also done for chronic illness related issues) and which often leads to urinary tract infections. Additionally, this is even more of a problem if you have other rest room related issues, such as Irritable Bowel Syndrome or Overactive Bladder, which I do.

Someday I will hopefully be read as a man. But before that day comes, assuming it ever does, there will be a whole stretch of time where I do not appear male or female to society at large. There are people who do not appear male or femal to society at large now. Some are in the middle of a transition. Some are nonbinary or gender diverse and some are intersex. Some people just were born looking fairly androgynous. Some people will never look male or female, according the standards of society. Even when someone does “pass’ their lives could still be in danger if someone discovers that a trans woman with a penis is using the women’s room or that a trans man with a vagina is using the men’s room. And all of us deserve to be able to use the rest room in peace, without harassment, attacks, threats to our lives and safety, or even dirty looks.

There is an awful lot of talk about things like “identity politics”, “disability politics” and “the gay/transgender agenda”. But here’s the thing — it isn’t politics if it’s your life. Actually, as I insinuated earlier, that isn’t neccessarily true. For some people who they are and their politics are all wrapped up together. Their identity is part of their politics and vice versa, and they like it that way and that’s fine. But for other people, it isn’t. And while being gay or trans*/NB or disabled or any other minority can be political, it shouldn’t have to be. However, the reality is that right now people who are just trying to live their lives and often even to survive, are forced to be political and are told that who they are is a politcal agenda that is either meaningless or morally bankrupt. But regardless of what a large portion of society says, it’s not (usually) political if it’s your life.