Pain, PTSD, looking “crazy”, and human rights
I have held off on writing much lately in part because I haven’t wanted to be a downer. (Even if I do a decent bit of ranting here, anyway.) On top of having continuing problems with language.
Though I’ve been reminding myself that my mind does not seem to handle language in the same way as most other people’s, these troubles have still been both frustrating and more than a little frightening. (More on that in a bit.) I may tend to come across as more hyperverbal–in a sometimes distressingly stream-of-consciousness chattering way–around people I know well, but language is basically not my native language. And sometimes I’m unable to act like it is.
With other abilities and probably even parts of the brain doing the duty of most people’s native language processing, that is one of the first things to go whenever I get sick, in pain, or otherwise overwhelmed. Usually I’m what they insist on calling hyperlexic–as in, if there is text in a script I can understand, I must at least try to read it–but I have rarely had the resources available to read and make sense of it lately. (Also frustrating with a fairly new Kobo and “stacks” of unread e-books there and on my phone, but hey…) I’ve been trying not to be too hard on myself, and not keep telling myself how stupid I am, but that only goes so far sometimes.
As people who have been reading for a while may remember, I finally figured out last winter that I had not (untreated) fibromyalgia, but a longterm vitamin D deficiency. The recovery is neither quick nor linear anyway, but things were improving–then I underestimated how much to increase the supplementation over the dark months, with no UVB rays available at British latitudes for months. Welcome back active neuromuscular irritability and osteomalacia symptoms!
It happened gradually enough–and I’d gotten accustomed enough to the signs over the years–that I only figured out a couple of weeks ago that it was time to double up on the supplements. Like sinking back into depression and only noticing when you’re about to hit bottom again. (Which is also directly caused by this deficiency, and probably did not help with figuring it out sooner.) Getting into the couple of months when people have the lowest vitamin D levels…yeah.
So, I’ve got some spasms back, my bones hurt, I’m trying to heal fairly fresh insufficiency/stress fractures in my pelvis and probably a couple of bottom ribs. I’ve been bone-deep, CFS-level exhausted pretty much all the time, on top of the depression and anxiety symptoms coming direct from the deficiency–and some reactive depression and anxiety, because of feeling like shit and hardly being able to get anything done. In spite of seeming to have a really high pain tolerance to the point that this has also caused multiple kinds of problems, the pain levels are once again triggering repetitive thoughts about wanting to die. (No need to call the cops or anything; I’m not actually suicidal. It’s an annoying pain response, past a certain threshold. Wanting constant pain to stop is not the same as actually wanting to die, no matter what Stupid Looping Tricks the mind starts playing.) The neuromuscular irritability from messed-up electrolyte levels also causes pain amplification, and with a nervous system already prone to sensory overload, I have been getting out of the house maybe once a week during a good week. To add extra fun, a lot of PTSD stuff has been coming up again: a lot of the point of this post.
I’m not fishing for sympathy here, but trying to explain what’s been going on. And laying it out like that, at least in part, to reassure myself that I really am having some legitimate problems.
Enter the secondary (and maybe tertiary, etc.) level of PTSD and disability shame.
More Stupid Looping Tricks: It must really be all in my head–trying to get some kind of dubious benefits I don’t even consciously want–and I just need to pull myself out of it and be a responsible person. I must just want to live in a horribly messy house, and not care about the effects it’s having on the people around me (including the animals [who actually don't seem to mind]). Not being able to bend over without stressing pelvic fractures is no excuse for being lazy. If I don’t snap out of it–or at the very least stop whining about it–Mr. U is going to get totally sick of me and throw me out. That would be understandable with the mess and the problems doing things like cooking and laundry on any kind of regular basis. Nobody wants to listen to me whine, anyway, because they’ve got real problems of their own. And I must just be unwilling to seek more medical treatment, and get some decent pain relief*–so should just suck it up until or unless I’m willing to act like a responsible adult.
Disability and gaslighting? You betcha.
And another level, getting closer to some of the PTSD: I keep waiting for the other shoe to drop, with the mental health concern trolling. I keep waiting for disrespectful treatment that I know rationally, based on experience to date, is highly unlikely to suddenly erupt from Mr. U.
I keep thinking of one quote from What Color Is Your Pain? (which came up before in a slightly different context):
“Consider, for instance, a patient who comes in with a ‘4’ or a ‘3’ on the 1-10 [pain] scale yet says he can’t walk, dress or do other daily living activities,” Green-Rashad continues. “Pain is really affecting this person negatively. You may notice behavioral signs–frowning, moaning–or changes in vital signs. I don’t think one parameter can be used exclusively. You have to put them all together.”
I am resembling that comment a little too much lately. This is not the first time I have had trouble doing things like showering as regularly as I would like, having disrupted sleep patterns, barely being able to go out of the house, etc.–from straightforward physical illness/pain. And I get extra shame and fear going, because I keep waiting for value judgments to be made and for these things to be put off on presumed mental illness.
And then have the trouble communicating, tendency to go stonefaced when I’m in pain, etc. taken very, very badly by the professionals I am forced to see. While that makes it easier for people with their own agendas to get heard over/instead of me…especially since I’m the crazy one, right? And get frustrated, abusive treatment when the, erm, “treatments” for the presumed mental illness just add extra problems on top of the autism and physical ailments. I am getting stronger PTSD reactions now, I think, because my physical situation now is way too reminiscent of several years after I crashed out of college, and was put on meds that helped get the whole chronic D deficiency thing going. I feel physically similar (plus stress fractures but minus horrible med side effects, now), and expect to hear the same horrible shit from the person(s) I live with every single day. To the point of cringing and crying sometimes.
Understanding better now some of the reasons my mom had a need to do this shit and set up situations where the other person honestly could not possibly win (not going into that much now, beyond that it was passing the trauma along) does help some. But, the reactions linger on, partly as extra disability shame. I haven’t managed to shower again, I get waves of dread and anxiety attacks when it’s time for Mr. U to come home. I keep having panic reactions, just looking at the messes I am not physically able to clean up. (Even though Mr. U honestly doesn’t notice most of it–which is another story. ) I feel like crap because I am not able to take the poor dog out for walks regularly, and the “Help, I’m looking more autistic!” factor is preventing me from hiring someone to do it.
And so on. And so on. And I get disgusted at finding myself acting like a whipped dog, when I am not trying to defuse OTT anger reactions.
Combine all that hypervigilance with the hypocalcemia/hypomagnesemia neuromuscular irritability, and you’ve got one huge spoon-eating monster, right there. (I may not be fond of the spoons metaphor, but it’s the only handy and somewhat readily understood one I’ve got.) That brings my ability to function way down, and I have been trying hard to apply some mindfulness and not let that spiral. And then feel guilty about turning into a gibbering wreck.
Another Stupid Looping Trick: It has also started trying to distract me from touchier subjects (really) with repetitive worries that even though I have a lab-supported deficiency, and the symptoms got better with more vitamin D–maybe I really have cancer like my mother. And I guess you’ll just have to make yourself go and get that checked out if you’re concerned about it, or you have no excuse for even worrying, right? That has been more annoying than anything else, but it also eats spoons.
But, yeah. Mostly I’ve been trying to convince myself lately that:
I have a right to be sick. I have a right to be in pain. Even if other people might also be sick and/or in pain, that doesn’t mean I can’t be. It’s not some kind of competition or zero-sum situation.
And, to go along with that: If somebody says they’re sick and/or in pain and you refuse to believe them, that is you, not them.
Even if I am crazy, I have a right to that too. Nobody else has the right to treat me like shit, if I am crazy. Nobody has the right to decide what’s really good for me, based on either their perception or the actual fact of mental illness.
Nobody has a right to decide how I am really feeling–physically, spiritually, emotionally, or in any other way–much less what I “should” be doing or able to do. They’re not me, and that takes a lot of gall.
Boundaries? Yes, they are a thing. And yes, I am entitled to some.
If I am feeling like shit, I do not have an obligation to try to pretend I’m not. If that makes other people uncomfortable, it’s not my fault.
Having cognitive problems–for whatever reason–does not make you less deserving of respect.
I am not responsible for other people’s feelings, beyond showing basic respect myself. If another adult cannot/will not learn to do emotional regulation, it is not somehow my fault. (See also the ugly side of Emotionally Volatile Bear.)
(Once again) I am not somehow obligated to push myself until I drop, regardless of any health problems I may be experiencing. That is abusive to my body (and mind, and spirit, and…) Nobody else is justified in expecting this, or getting insulting when I cannot/will not continue doing it.
Nobody can always Be Strong. That is easily twisted to hurt people. There is nothing shameful about not being able to Be Strong in every way. And it does not somehow justify/excuse lousy treatment.
If you are placing value judgments on what you don’t understand, that is your problem. It is not the other person’s, no matter how hard you try to make that so.
If someone else is having trouble speaking in a way that seems acceptable to you, that does not mean that you can just decide what they want to say and speak for them. Not at all.
Deciding that a disabled person is such a drag that you need to end the relationship is just plain shitty. And not somehow the fault of the disabled person, should that happen.
Anybody who wants to dismiss someone else’s symptoms as psychosomatic–especially when that means just not treating them–should experience all those symptoms for at least three months. Even if that does include things like feeling like your bones are filled with boiling/freezing lead, and having some of them just snap. And get sneered at and mental health concern trolled the whole time, instead of adequate/any pain relief. Seriously. I’d pay to watch in a couple of cases, low on compassion as that sounds.
That’s all I can think of right at the moment, starting to experience a language spoon depletion. There’s more.
An excellent post on this very topic, which I ran across the other day at PTSD Forum: Your Basic Human Rights.
I grew up totally unaware of my basic human rights.
I don’t know if this is common among people who have ptsd or not, but I thought others may find it as helpful as I did, so here is what I learned about my rights
I’m not going to quote all of the list, but it is excellent. And, yeah, I grew up unaware or maybe half-aware that I might have most of these. Another excellent whole thread there that I have not managed to finish yet: Invalidation: The Root Of All Evil?.
Which leads me to what prompted me to finally break the recent silence today: The Loud Hands Project.
And I automatically felt like crap that not only have I not been able to participate in that project so far, I didn’t even know there was a Blogaround going. Because I haven’t been able to keep up with other blog reading–much less interacting through comments–either.
I also want to do videos, myself, and have not been able to. After some really awful speech therapy (of the “audio record, play back, and mock”, “you’re Not Trying Hard Enough” school), I get anxiety attacks at just the idea. Maybe when the background stress levels are lower I could do it if I post things without first listening to or watching them to edit, but I actually tried turning the camera on myself earlier and had a serious panic problem.
And, yeah, all of that is very relevant, being ultimately instilled shame over being an autistic person. Who responds to illness like, erm, an autistic person–and starts looking much “lower-functioning” and not being able to pass so well.
* It couldn’t be thanks to dismissal, being told repeatedly that it’s all in my head, having real trouble communicating when sick/in pain, and being afraid based on actual experience that I might get forced psychiatric treatment if I object to being treated like shit. And it’s not like I wasn’t in mostly untreated pain for 15 years while seeing doctors regularly, whether I wanted to or not. I could rant more about that, but I think you get the picture. The medical PTSD–and thinking about some of the problems that caused it–has been getting on my nerves.