To All The Children In Severe Pain Tonight (BADD 2015)

[This is my post for Blogging Against Disablism Day.  I will also have a post on my poetry blog, once I get around to rounding up all the poems I’m going to put in that post.]

I reach out for my body. It’s an instinct, all young ones must have it. But instead of feeling hands and feet, I feel a blast of burning pain, like stepping into an oven. I retreat back to the murky ocean I float in all the time. The pain is off somewhere distant, but so is my body. “Thoughtful” is a word I hear used a lot, when I stare off into space disconnected from my body.

Later, psychiatrists will call it severe dissociation. They will diagnose me with dissociative disorder, not otherwise specified (DD-NOS). They will talk about a ‘biological predisposition to dissociate’. Even when the extent of pain I am in comes to light, they have trouble seeing the dissociation as a symptom of severe pain, rather than a thing in its own right.

Dissociation got me through 20 years of severe pain. 20 years in which by all rights I should’ve been curled up in a ball doing nothing, yet I was active, I was doing things, I was going to school, I was climbing trees. I didn’t know this was severe pain, I thought it was just another feature of the world. Trees have bark and my skin burns, the sun shines and my skin burns, the sky is blue and my skin burns.

Now they say my mother has small fiber sensory neuropathy, that maybe I was born this way, inherited from her, however our nerves got like this. It responds to Neurontin, and Lyrica, and Trileptal. It acts neuropathic, it acts like central pain, nobody knows which is which for me.

This is a shout-out to all the kids — all the kids living with so much severe pain you wouldn’t believe it yourselves, because it is your normal. And you go on trying to do normal stuff. And sometimes you can’t. Sometimes the pain just grips hold and you have no means to deal with it. But you don’t know you’re in pain, so you push against it, and you think you’re weak, everyone else can do this, why not you?

Why not you? Because you’re in severe pain and you don’t even know it. You may not even recognize it as pain, because pain is such a broad and nebulous category.

My heart goes out to every single one of you. All of us who are going through this now, as children. All of us who survived and made it to adulthood and now know how much pain we were in, and wonder how we got through it. All of us whose pain is being treated as DD-NOS or another psychiatric disorder, because all people can see is our emotional responses to pain, not the pain itself. All of us who are told ridiculous things like “You have pain that gets less on Neurontin? The pain must be part of a seizure.” All of us who are told that if we were really in pain we wouldn’t be able to do what we do now… they throw our expert coping mechanisms back in our faces, and want us to see pain psychologists who will teach us everything we already know about how to manage pain.

Everyone in this situation — I am thinking of you tonight. Together we form a whole constellation of pain, burning bright. And however well or badly we are dealing with the pain right now, we are people who are surviving.

The Summer Thing

I want to start out by explaining what this is, and what this is not. Blog carnivals tend to bring in unfamiliar readers. People tend to misunderstand topics like this one. So here goes:

I write about things like this mostly because nobody was talking about these things when they happened to me. I want people who are going through similar things, and those around them, to have a frame of reference I never had. I also want to end the taboo that says only bad disabled people talk about our bodies and the things that have happened to us. The one that says all such discussions must be a plea for pity or attention. So if you get only one thing straight, it’s that this isn’t about getting sympathy, it’s about describing a piece of reality.

This is for the disability blog carnival. The theme is relationships. It might take awhile to explain how it fits into this theme, but I’ll get there in the end.

I have always experienced the world in ways that mesh up with neither language nor most people around me.

Body perception is one of those things. Internal sensations feel external. My brain also doesn’t prioritize them in the usual way. Once, when on neuroleptic drugs that only amplify this problem, this happened:

I was pouring water from a large bucket, onto an electric fence. I slowly realized something was different — no, bad — no, very bad — and hang on, it seems to be in the vicinity. And colored bright white, and… oh yeah, painful, and pain has something to do with my body (???), yeah it does, but where on my body, …, …, …, …, …, arm. My arm is a part of me. Let me turn my eyes on. Now look at my arm. Stuff on my arm. Stuff… water. Where is the water going? Fence. Electric… oh. Better stop this. Where’s the arm again? Got to move it. (Wait for those instructions to mosey down into my arm.) There. Phew.

But even without neuroleptics, connections like that can take even longer. I was lucky I was old enough to make such connections on my own at that point.
 
That level of detachment from one’s body can happen in autistic people and can happen as a neurological response to a kind of pain that’s existed as far back as I can remember feeling my body at all. So it’s hard to say if it’s one or both that caused that kind of thing.

So I am trying to give enough background information that when I start describing certain kinds of childhood experiences it will make sense. It’s hard because as usual the English language wasn’t built for the sorts of things I’m trying to do to it.

When I was a kid, I sometimes considered myself bad. Other kids didn’t scream, cry (the noisy out of control kind), or lash out when cornered by bullies. I felt like I was always in trouble. Even bullies got higher grades (and even sometimes awards) in citizenship. There was something about this that had little to do with social skills, though. I had no words for it, but in my head it was always connected to summer.

I experienced it as external. The sky existed, the black stuff on the ground existed, and the summer thing existed. Like the sky and the black stuff on the ground, the summer thing covered a wide area. But unlike them, it truly seemed to be everywhere.

It got a little less if I pressed body parts into cold, smooth surfaces. It got a little more if I was stressed out or having to process more information. But otherwise, the summer thing changed in ways I could never predict or explain. The worse the summer thing was, the more “bad” I was, and the less I could relate to people (including myself).

When the summer thing got bad enough, all I could do was cry or scream, or sometimes just sit there encased by it. My dad told me later that I used to scream or cry for no reason. My dad didn’t know about the summer thing.

Nearly always, I felt like I was cut in half. Half of me was in the clutches of the summer thing. The other half floated somewhere distant and numb. I tried my best to increase the numbness however I could. Half numb was better than none of me numb. I spent a lot of my “free” time finding ways to distance myself from the summer thing. When I had to use the most effective of those techniques in public, people accused me of having a creepy thousand-yard stare.

Not surprisingly, when I ended up in the hands of psych professionals they saw “severe dissociation”. They spent lots of time trying to connect it to physical abuse and molestation, but those things were barely a blip on my radar compared to the summer thing. Eventually they decided I was just biologically set up to dissociate easily and that I used it to deal with boredom. Even though in reality I was almost never bored and almost always the opposite — overstimulated and overworked.

The funny thing is that pain psychologists teach patients with severe pain the same techniques I discovered on my own. But when they teach it they call it adaptive. Every time I go for a nerve block, they have someone there to walk me through the same techniques my body discovered before I knew I had a body. Because severe pain is exactly what the summer thing is, and professionals consider dissociation under those circumstances more adaptive than pathological.

When I was 15, the doctors put me on Neurontin for seizures. This made the summer thing fade a fair bit. Either I couldn’t describe it well, or they didn’t know Neurontin treats several kinds of nerve pain. Because they told me if something went away on Neurontin it must be a seizure.

When I got off Neurontin, the summer thing came back and pretty much stuck around until my early twenties. At that point I’d spent three months mostly writhing around on the couch before a friend said “This is how pain makes a body act, go to a doctor.”. I went to the doctor and she put me on Neurontin pretty fast, which helped both the pain and the seizures. I’m now on a Lyrica/Trileptal combination that deals with the summer thing, the seizures, and trigeminal neuralgia all at once. But even once I first got on meds, the spot that had formerly occupied “1” on the 1-10 pain scale now occupied a “6”. Which is a huge change.

It was only after treatment I could begin to either describe the summer thing itself, or differentiate lots of smaller pains that it blocked and distorted. Synesthetically it’s dots and streaks of brown, orange, yellow, and white. And what it feels like? Burning, both burning hot and burning cold (like I’ve been told liquid nitrogen feels like). And prickly. And like my skin has been scraped raw, gone over with sandpaper, and then sunburned. Hence “summer”. And like… if I had heartburn, for instance, instead of feeling just the heartburn in one spot, I would feel like someone had put an iron on my entire upper back that was red-hot and ice-cold at once. I only got treated for a lot of other lifelong conditions after the summer thing had been treated enough to feel them.

From what I’ve heard, even people who never had pain or communication problems before developing something like this can find it hard to describe. They’ll end up describing limitations on their functioning, or use torture metaphors, instead of describing pain. Because pain that they are used to feels like a whole nother category than this. It just doesn’t feel like it ought to have the same word. So maybe as a person who never knew life without it and who had communication problems I can be excused for not even knowing I should describe it, let alone knowing how, until that first dose of Neurontin made it lessen.

What’s the actual name for the summer thing? From my descriptions, people have told me it’s some kind of neuropathic (nerve-related) pain. But whether it’s originating in my brain or somewhere further down the line isn’t something they can tell with current tests. And since it began so long ago, nobody knows if it’s a function of an injury, or the way my brain or nerves happened to grow, or some early neurological response to overload, or what. It’s also important to realize it’s not gone. It’s just less than it used to be.

Now there’s enough background laid out that I can talk about how this thing has affected relationships, which is the whole point of this blog entry in the first place.

The first relationship the summer thing interfered with is my relationship with myself. On both a psychological and physical level. How do you form a relationship with yourself when the more connected you get the more it hurts? I spent most of my time trying to edge as far away from myself as possible. One of my early memories involves trying to imagine the world without me in it, and getting aggravated that no matter what I imagined I was always the one imagining it. If I got anywhere near my body or mind I would get overwhelmed by this blast of pain and retreat if at all possible.

If I picked up a Lego block, my hand felt a burning, scraping afterimage for hours. Touch from humans created a different afterimage. Sometimes I would put up with these things and sometimes I wouldn’t but it was never without a price.

When pain gets severe enough, it does weird things to your thoughts and feelings. A lot of the anger and fear that made me “bad”, stemmed from the summer thing. The only way I could get calm was by identifying with my numb side. And the problem with the numbness was that it went away the moment I felt into my body to either move it or interpret what was coming through its senses.

So imagine I am lying curled up in bed, losing myself in the dark brown bedrail. Then someone comes in and wants a response. If it’s a good day, I may be able to imagine the response without any unpleasant feelings attached. But even then, most of the time I ended up snapping at the person for no good reason they can see, and for no reason that I can understand. Predict, yes, but understand, no. I often did an aggravated hiss my mom called “lizard breath”, but I wasn’t in much position to understand or explain the irritability. (And pathologized as I was sometimes, I shudder to think what a modern therapist would have diagnosed the irritability as part of, or treated it with. I have some good guesses.)

So I end up becoming a really grouchy person with no idea how to avoid being grouchy, and this becomes one more thing to hate about myself. As usual at that point, I had no idea how other people avoided snapping, stomping, hissing, growling, and generally being disagreeable. And knowing I was. And not knowing why, or how to avoid it.

I also learned an awful kind of strength. I was always expected to do things people in that level of pain don’t normally do. And even if I did not learn to do those things, I learned to exceed the expectations of someone in that kind of pain. I didn’t think I had a choice. When I failed, I beat myself up harder than anyone. I learned to push myself until collapse.

To this day, this makes it hard to admit when something is wrong, pain or otherwise. The stuff I do admit to is the tip of a large iceberg. I try to talk about these things because I believe it is very wrong to teach people it’s wrong to discuss them. But I am fighting the training that taught me to press on no matter the difficulty. Because the result of pressing on is almost always dangerous, sometimes deadly. Even though I know this, it is almost always other people who threaten and cajole and drag me to the doctor or hospital when something is wrong. Because growing up this way has also messed up my relationship to my health.

The summer thing also sometimes has made me seem weak, not strong. Those times when I could do nothing other than curl up and cry, or hit myself, or zone out as far as I could. Try explaining that when you don’t know what’s going on, and don’t know fully how to connect words to experiences. That one affects relationships by convincing people you are weak-willed or bad somehow. And so do you because you don’t understand the forces behind these problems. Especially when it’s always been there so it’s just scenery.

“Answer me. Why is she lying there on the ground? I’m serious. What are you two up to? I need an explanation,”

(My body had taken over and I was pressing my face and arms into the cold concrete. I kept hearing these high pitched sounds that turned out to be my own voice sort of wailing. And I wouldn’t have had an explanation that would satisfy those guys even on my best day. And how was the person with me supposed to handle always being called upon to explain me? He reads this blog sometimes, so at least he can find out.)

Years after that, I was in a similar situation and eventually asked a friend why my body kept acting like it was in pain. She responded that my body was in fact in pain, and that the reason I didn’t understand my own reactions was the dissociation that goes with severe chronic pain. And that nobody who wasn’t in pain would ask that question. Wish I had had people like that around as a kid.

This of course affected sexual relationships as well. Touch in sexual contexts can temporarily diminish the pain a bit (and a lot of other things, according to a book I’ve read on the science of sex), but only to a point. Try to push anything into the usual orifice, and my reaction is more like a scared wild animal than a sex partner. As my only sex partner found out the hard way.

It’s affected my relationship to any activity I do with my hands. Many activities I used to think I just didn’t like, were things that made my hands feel scrapey for the whole day afterward. Lego blocks are only the first of a long list of things that seemed great until I touched them. It’s why I never use my Zometool set unless company wants to, why I finally got rid of the things.

The summer thing has also created a certain kind of distance in all my relationships. When I am in the part of myself that feels more pain, the pain fills up my head and creates a wall between me and whoever I relate to. When I am in the part of myself that floats at a distance, the floating creates its own distance. This effect has lessened with medication, but it’s still there in some amount no matter what is going on.

Many of the effects on my life I have talked about, are things that other conditions have affected as well. It’s impossible to know which has contributed how much to what, and I have not even tried to work it out. And while I cam sit here and list off things it’s affected, I don’t generally sit around feeling morbid or morose or melodramatic about it. Everyone’s life has constraints on it, mine are just not the same as the usual ones. It doesn’t make me pathetic or pitiful. It just exists and always has. I don’t have to like it, but life’s too short to wallow in misery about it, so don’t get me wrong about my reasons for writing about it.

When I think of relationships the summer thing has affected, it’s hard to think of anything it hasn’t affected. It’s affected my relationships to my mind, my body, my emotions, my family, my friends, people in general, anything or anyone at all in my environment. It’s made it so that my two main vantage points in life have been either scraped raw and affected painfully by any sensation, or else floating numb but too far distanced for direct interaction. It’s a good example of how a condition that isn’t technically supposed to be pervasive, can affect just about every conceivable part of my life. Even though I take every effort possible to diminish this kind of pain, like all events that have left such an intense mark on my past it is something that I have a hard time knowing who I would be now if I hadn’t grown up with it. Life is too complicated to know things like that, and it doesn’t make much sense to ponder an unreality that much.

So that is more of the history of the summer thing than I have ever written. I have gone into pieces of it here and there, but never gotten as much detail as I have just now. And it reminds me all over again how complicated life is, because there is no way to write about everything on even a topic so narrow as nearly thirty years of a very particular condition, let alone any other topic a person might write about. Experience always has more depth than words can (if they are used in even the best way) just point at, even a few seconds of experience. Not that I ever really forget this, but tasks like this one bring it home. And finding anyone with similar experiences (not just to this, but to anything) can create a level of intense resonance that renders words unnecessary after a point. Having almost no such resonance until I was an adult, is why I bother with the task of pointing at experiences in words, and working for years just to get some of them out at all — so that anyone with similar experiences might find such kinds of resonance (or find the words and tools to express it to others), and anyone who knows anyone with such experiences can understand them a bit better. And it works even though no two people can have the exact same experiences. And things like this are how I have formed some of my most rewarding relationships despite the distancing effect of the summer thing. It’s like even if pain sometimes forms a wall, this kind of resonance makes it possible to perceive the other person without having to scale the wall itself. And having those few but invaluable relationships gives me the will to scale that wall in relationships where there is no such shortcut.

Breaking out of sheer monotony.

For the next disability blog carnival, with a theme of “breaking out” (but not in rashes) (hosted by Andrea of Andrea’s Buzzing About, I was going to write something all about the fairy tales people tell themselves in their heads about disabled people. I was going to talk about the fact that when you’re not one fairy tale, they go “Oooh, so you’re this other fairy tale then.” And of course the consequences of not living up to other people’s fairy-tale versions of disability, or of being some weird hybrid of them that nobody expects.

However, I’ve been ill lately, and that’s made it difficult to write about that particular thing, but necessary to break out of something entirely different. A strange, monotonously repetitive mindset that seems to go along with some levels of pain and weakness.

It goes something like this (translated into words, of course):

• Hmm, there is something I think I might want to be saying or doing right now.
• That means I have to translate it into the right words or actions.
• So here I go, translating.
• I need to connect to my body more in order to do all this. Right now, my mind is sort of floating off and detaching to try to deal with this.
• Okay, there’s the body, that’s what I’ve got to figure out before I can type or otherwise move.
• YEEEEEEEEEEEOOOOOOWWWWWWWCH.
• Okay, need to find a way to deal with the pain.
• Brain is floating off and disconnecting again.
• Thoughts are turning into all these little wispy fragments again.
• Got to try to make at least some sense out of what’s going on, because it’s purely miserable otherwise.
• Hmm, there’s something I might want to do or say…

Only, repeat it. And repeat it. And repeat it. And repeat it.

Until it turns into, not a bunch of separate things occurring in a particular order like I describe above, but a whole rhythm of experiences where different things sort of pulsate in and out of awareness in a regular pattern, and the whole thing is covered over, no matter which part is going on at that moment, by feeling really, really lousy and ill. And it gets mostly tedious and monotonous, of all things, because the rhythm sticks in my brain even if memory of what’s going on keeps sliding out of it.

And I’m not really talking about anything minor, either. Even before I realized anything was up, people were telling me I looked really crappy. At the worst of it, someone called 911, and the paramedics tried to test my level of alertness by pressing as hard as they could on a nerve that was near the surface and already irritated. I felt the pain, but failed the test completely because I couldn’t do anything other than stay limp. (Which might be good in a way, because normally if someone inflicted that much pain on me I’d fight back.) The whole lack of response == lack of awareness idea is one that really bugs me, although I know there’s some kind of protocol that requires the whole pain-infliction routine.

At any rate, even when things haven’t been that bad, things haven’t been the best circumstances for a long, eloquent post on disability stereotyping either.

So instead of the post I was after about breaking out of stereotypes, you get this one, where I get to attempt to break out of the rhythmic monotony of thoughts being thwarted by pain and exhaustion. Please try to avoid those pesky stereotypes while reading this, though; they get old.

There are a few reasons I made this post:

One is what I said, to break out of the monotony. Not that this is the only time I’ve done so (the repeating-thing seems to come and go), but it’s one time. And even lying around not doing much gets a bit old even when I am doing better than before.

Another is just in case it describes an experience that someone else might’ve had but had trouble describing. Because that’s something that’s often important to me. It took a lot of work to ask someone if this was common, and it turns out it’s a pretty common response to pain and illness in general if it’s bad enough. I’ve experienced it before, but of course at the time when I’m experiencing it, I don’t usually have the capacity to remember any other time, nor to imagine it stopping or anything changing in the future. It’s only in retrospect I can put it in any kind of perspective, because at the time my already-tenuous grasp on time is, to put it mildly, not there anymore.

And the third reason is that I can now at least post the thought that most commonly leaps to mind during the phase when there’s something I want to communicate that ends up getting cut off before I can say anything. It’s something that goes, as well, for every other time I either can’t think or move in standard enough ways to generate responses other people understand. It translates best as, “Please remember I’m a person.”

So maybe my inability to post what I was intending to, isn’t so bad after all.

When doctors ignore pain, and new agers worse than ignore it.

I have frequently been, the past few months, in a state of strong but controlled rage. What anyone reading this has to understand is that the rage is not only for my own situation, but at how large the situation, and similar and worse situations, are, for a whole lot of people in the world. If it were only my own situation… well then I might not need to write about it so much, and I wouldn’t be this mad about it.

At some point I started realizing the back pain I was experiencing lately was familiar. The part that made it somewhat obvious was the kind that starts at one spot in my spine and radiates either upwards or downwards. I remembered that. What made it even more obvious was when the pain was terrible, and I was twisting around into all kinds of positions on the floor trying to find one that took the pressure off the parts that hurt the worst. Then I remembered what it’d been like in my late teens. And I remembered what was done about it.

I’d been able, somehow, to say something that got people’s attention about the pain that I was feeling. It was intense. Almost as intense as it’s been lately. I was having not only back pain but periodic migraines and the pain that is now being called some form of trigeminal neuralgia. I was only able to articulate a lot of it in vague ways, if at all, but I did articulate it.

At one point I was sent to my general practitioner about this. He told me to bend over. He told me that since I was obviously quite flexible, there was no physical problem in my back, and therefore nothing to worry about. (Even though I have a family history on my mother’s side of spines so flexible that they induce pain and other problems.)

Then someone suggested that I check into some alternative concept about this pain. It had to do with energy. There was supposedly a snake curled up at the bottom of my spine. My problem, of course, was that the snake was jumping up my spine, creating all this pain. When it thrashed around in my spine, that created the different positions I twisted myself into. When it thrashed around in my head, those were the migraines. This was an acceptable thing to believe in California. They had therapists for it.

I went to see a therapist for it. She showed me diagrams of the different areas down my spine and what they all supposedly meant. She told me that the snake awakening in me had something to do with spirituality. At one point she told me that autism was just being born with the snake awakened. And the different parts that hurt had to do with spiritual progress or spiritual blockages.

Nobody offered me physical therapy. Nobody offered me pain management. Nobody offered to try to find the source of the problem. All I got was the woman my father dubbed the “snake lady”, whose main advice was that I ought to stop praying and join a cult because there was no way I’d survive — literally, she said I’d die otherwise — without a guru with a long Indian-sounding name and a big following of well-off white new-agers.

Meanwhile, I had been trying to function.

I had had to drop a class in college because I got terrible headaches. (Headaches, I was later told, were a sign of higher spiritual advancement, and I just needed to get the snake to jump out the top of my head in order to get release from this pain, the problem was I just had these blocks that wouldn’t let me.)

I tried to go to university when I was in so much pain that I spent a lot of my time writhing into different positions on the floor, crying, moaning, or screaming. I didn’t know it wasn’t only being autistic, but also the pain I was in, that was keeping me from functioning there. I didn’t even know fully how much pain I was in, or that I was in pain so severe that most people would stay in bed, call their doctor, and not even attempt anything close to what I was attempting.

I didn’t even make it to class most days. I thought I was dumb, weak-willed, and crazy. I felt the pain, it wasn’t that I couldn’t feel it, but I couldn’t connect the feeling to the severity of what I was experiencing, or the limitations in what I could do. I kept straining to do more and more and being able to do less and less. And when the snake lady and similar previous people got hold of me, I began to see myself as lacking in all kinds of spiritual qualities, and began praying desperately for help and guidance (which I did receive eventually, and said guidance told me to get the heck away from all this snake crap) and viewing myself in general as having some horrible deficiency related to the symbolism the assorted snake-obsessed people taught me about whatever area I had pain in.

People around me didn’t see me as in pain, either. Because I was autistic and had spent my adolescence in both inpatient and outpatient versions of the psych system, I was simply proving that crazy autistic people who go off their meds don’t belong in universities. They were perceiving me through a specific lens, and therefore unable to perceive what was really happening, even though it was right in front of them, and if I had been ‘normal’ it would’ve been clear as day to them why I behaved just like someone in severe pain, and why a person in untreated severe pain might not be able to function in a university environment.

I left university and found the snake lady.

And eventually I left the snake lady too. (As I got into the car with my mother after announcing my intentions to do so, she screamed at me and my mother all about how I was making a mistake.)

There was someone else who was heavily active in the same circles as the snake lady. The snake lady looked down on her because of the fact that the disease she had did not go away. The snake lady seemed to see that as a sign of lack of spiritual progress. This person died of the disease she had, still convinced it was a spiritual problem.

It took the pain I’ve experienced the last several months to remind me what it was like back then. I’m now in complete awe of the amount of things I tried to take on in a state so reminiscent of what I’ve been feeling like lately. And I’m also enraged. Not in a way that consumes my life or anything. But a quiet rage that shows up whenever I think about this whole thing. And I don’t think it’s at all misdirected

It’s directed at all physicians who treat some people as if we’re not the same as their ‘normal’ patients, and as if our expressions of pain don’t exist or don’t mean anything.

It’s directed at all physicians who simply refuse to treat severe pain, or to try to find out why it exists.

It’s directed at at the parts of the new age movement that step in where the physicians have failed to, and encourage people to view people with chronic pain, including that which comes from life-threatening diseases, as experiencing a spiritual block of some kind, and thus being either higher or lower spiritually, but definitely not in need of something like, say, pain management or treatment of the actual problem or anything like that. Don’t get me wrong, I’m all in favor of genuine spirituality, and even don’t mind the possibility of genuinely considering where our bodies fit into our religious beliefs, but this is not it.

For me, in this particular case, it was eight years of missing out on possible treatments for severe pain while wondering at times why I couldn’t function. For other people, it can be longer. And for still other people, a disease can take their lives while doctors are standing around doing nothing and the new-age movement is stepping in to tell them their pain either means they’re on their way to enlightenment or they’ve sinned in some way to cause it. There is nothing good about this situation, but maybe writing about it will be one step towards changing it. And doctors, take note, when you refuse to treat this sort of thing, the people who eagerly step in to take your place have an even worse effect on your patients than nothing at all.

Edited to add: Another thing doctors should take note of, is that sometimes the new agers (or whoever else teaches these strange things) have gotten to your patients first, or sometimes your patients have extremely different interpretations of the sensations in their body than you do. I wish I could remember the web page I once saw where a doctor had written down some stories he’d told his medical students.

One of them was about a man who came into an emergency room screaming that the devil was squeezing his heart. At first, the people who worked there didn’t take him seriously, figuring he was “just schizophrenic” (which was, in fact, a diagnosis he’d received at some point), and that therefore any odd perception he possibly had must be a hallucination or delusion and have no grounding in reality at all. They were proven wrong about those assumptions when the man had a heart attack.

The moral of that story is, just because someone tells you that the devil’s squeezing their heart doesn’t mean nothing’s wrong with their heart, and just because someone tells you there’s a snake jumping up and down their spine wreaking havoc doesn’t mean they don’t have some kind of genuine back or neck problems, migraines, MS, referred pain from any of a number of internal organs (I’ve felt pain in the middle of my back from gallbladder disease and reflux personally, and at the time I saw the snake lady I had untreated nerve pain that amplified any pain of that nature to cover a larger area than it did after treatment), or other things that might cause that kind of pain. Whether their perceptions are distorted to begin with, or whether they’ve been taught to view things in a way that seems distorted to you, or whether they just happen to have a very colorful way of saying things, it doesn’t mean there’s nothing behind what they are telling you.

Forgetting that something is ongoing

Edited to add: Both the ongoing severe pain and the absolute worst pain turn out to be trigeminal neuralgia that was misdiagnosed as a migraine. I do have migraines. But not constantly like I was told.

The Smiffy’s Place Blog, in one BADD entry, talks about the question, When Will You Get Better?.

This is the sort of question I get a lot. Not for autism, really. But, in particular, for migraines.

I may have mentioned before on this blog: I’ve had an ongoing migraine now for several years. I didn’t realize that part of it was a migraine until I went to a migraine doctor, but it’s basically an ongoing migraine, sometimes severe, sometimes moderate. (I’d assumed the moderate pain couldn’t be a migraine.)

Right now, as it has been for pretty much since October, it’s in the severe range almost continually. As in, my baseline level of pain is between 5 and 7 on the 1-10 pain scale of someone who’s had severe pain for a lifetime. (Translation: Most people with no experience of severe chronic pain would probably rate it higher, although I already did have to adjust my entire pain scale after I got pain treatment, since pain treatment revealed to me that my previous “1” was really a “3” or “4” at least.) I’m vomiting a lot if I don’t keep taking tons of Dramamine, and sometimes even if I do. I’m having to cut off activities I could do when the pain was at a more moderate level, and the migraine interrupts anything I’m trying to do throughout the day. It causes huge levels of fatigue and clouded thinking, too.

I’m not saying all that to make anyone feel sorry for me, just to give an idea of how much pain I’m in on a regular basis. (And yes, I’ve tried tons of migraine treatments, I don’t really want to hear everyone’s migraine advice. The last migraine prophylactic med I was on actually worked, as in it took my pain down to moderate instead of severe, but it also did a lot of unpleasant and dangerous things to my body, so I had to stop it.)

Anyway, this is something that’s always here. It’s always affecting me. It’s never gone.

What I notice is that unless I broadcast some signal of pain, people seem to forget I’m in any pain at all. If I don’t talk about it, and I don’t grimace or vomit or lie down in a dark room with ice packs on my head, people assume it’s not there. And then they attribute all kinds of things that are pain-related, to other things entirely.

And then when I do show it, it’s “Oh, do you have a headache today?”

And I keep thinking, “Okay, how many times have I explained to you that I’ve always got a headache? If I don’t have a headache, that will be news.”

In So You Know a Dyke with CFS, Carolyn Gage writes:

DO ask me how I am when we get together for an activity. That lets me know that you are willing to be my ally in confronting the challenges I am meeting during the time we are together. I have come to learn that when you don’t ask, it means you don’t want to know. It means that your plan is to grant me the “privilege” of being considered your able-bodied peer for the duration of our activity. In other words, my illness will only be real for you if I bring it up. Experience has taught me that this attitude results in your equating my mentioning of symptoms with my causing those symptoms. And you will oppress me accordingly.

(Emphasis mine.) That seems, to me, to be exactly what is happening. People seem to expect this migraine business to be something that just goes away. Even if they’re told that it’s ongoing, I’m not sure they believe it. So, it’s only real when I mention it or give some indication that it’s going on.

In October, my roommate mentioned, also, that people who don’t have migraines seem to think that since they’re common, they must be mild. She said that a lot of people don’t even believe the degree of pain and other unpleasantness a migraine can cause, let alone that a migraine could last a long time. Others, including especially people who get migraines only temporarily, don’t believe a person could function with a migraine, so would disbelieve this from a totally different angle.

The truth is that if you have something every day, you learn to function better than if you’re hit with it intermittently. Not that I’m doing things as well as I do when the pain is milder, but I’m doing more than I would if this were temporary and could be expected to go away. One time I tried lying in a dark closet for the duration of a migraine and realized after three days that this wouldn’t work. At the moment, I have to lie down several times a day, and I’m probably going to have to go vomit again after I finish writing this, but I also get up and do stuff sometimes. With chronic migraines, the pain fluctuates, it doesn’t stay at total hell level all the time, just mostly-hell level. And with severe pain in general, if it lasts long enough, there are times when it seems to fade out a bit, even when it’s still there as much as before. Plus you develop all kinds of ways of detaching from your body (up to and including, in my case, full-immersion hallucinations and/or total disorientation and/or unconsciousness if the pain gets bad enough; I’ve experienced this with migraines, with the other kind of pain I get, and with post-surgical pain when the hospital screwed up and forgot painkillers).

Or in other words, as Diary of a Goldfish describes in their blog entry for BADD, the sick role doesn’t work for those of us who have one of these supposedly “temporary” things that refuses to go away. I may still be trying for a migraine cure, or at least a migraine “beat it back a fair bit until it’s manageable”, but I can’t put my entire life on hold until I do. Certainly there’s a lot of things I do less now than I would otherwise, but I still do more during a migraine right now than I probably would if I only got one of these a couple times a month.

My thought, with this and so many other things that people don’t notice, is often something like, “I bet if the people who have trouble believing this is ongoing, had to live in my body for one hour, they wouldn’t be able to function. At all.” They’re probably not used to the degree of pain that I’ve been used to as long as I can remember (from things other than migraine). They’re not at all adapted to my perceptual setup, and would probably just collapse in overload. They don’t know how to pace themselves for stamina problems like the kinds I have, and would rapidly end up what staff used to refer to as “fully catatonic”. I have a lifetime of figuring out how to function in this body. They don’t.

But regardless of this, many hold me to standards that would probably be impossible to hold themselves to. And when it comes to migraines, or other things like that, I am pretty sure that what I experience is not “real” to them until I mention it, and then it’s not “real” anymore until the next time I mention it.

I’ve even had medical professionals become skeptical when I talk about not reporting severe pain (that probably is central pain or something similar) for twenty years. Central pain (or other pain like it, since there are neuropathic pains besides that that act the same, I’m just assuming since no nerve damage has been found that it’s probably central pain) tends to be under-reported anyway, because it’s so alien to any form of pain that most people ever experience, and because it’s so often associated with communication trouble. It’s most often reported as debilitation rather than pain. If you’ve had it as long as you can remember, then what? How are you supposed to know? But, at any rate, apparently that pain wasn’t real until I reported it either, and continues to be unreal even if I do report it.

While I was writing this, my case manager walked in the door and said, “Uh… do you have a migraine today?” I told him about this blog entry and said “The day I don’t have a migraine, you’ll be among the first to know.”

I’ve also had staff assume, not just once but many times, that if something wasn’t happening on their shift, it just plain wasn’t happening to me, even if I mentioned it.

I do wonder if the notion of something not going away, makes people uncomfortable. If it’s more than just “forgetting,” but “not wanting to think about”. At any rate, regardless of what intentions are behind it, I do notice that if people are likely to “forget” that I’m experiencing something, they’re also likely to “forget” the different ways I might need to do things, the access problems, and so forth. And to become almost irritated, if I bring those things up, as if, yes, mentioning them is causing them.