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Quickie: More things not to say to people, and diabetes management

March 6, 2012

I’ve been having a little more energy again lately, after increasing the vitamin D supplementation–but have still been running into chronic spoon shortages, and even more sudden Out Of Spoons Errors (cannot brain, shut down, often need sleep to reset) thanks to trying to play catch-up while still in fairly crummy physical shape. (I may not find The Spoon Theory a particularly adequate analogy, but it’s the best one I know of that’s somewhat readily understood. At the very least, different colors and shapes of utensils are needed, though.) But, it seems like writing is working a little better unless I have to exhaust myself with other stuff first, and with any luck I can get at least one post I want to write done. (Most recently inspired today by still more discussion of diversity in atheist blogging.)

But, this isn’t it. (Actually another “started out as-e-mail share with Mr. U” post.) Not having been keeping up with blog reading too well lately, I just saw a good recently one at Autistic Hoya:  15 Things You Should Never Say To An Autistic.

Good post, with excellent examples of why keeping any assholery to yourself is an excellent plan. (Like the commenter I quoted there (http://goo.gl/BgCbj), I honestly do keep getting amazed.) I’m not up to commenting much more on the post right now, and I haven’t even directly gotten any of the NLMC/”you can’t possibly be a Real Autistic because…”/etc. BS.

But, a couple of rather tangential observations that caught my eye, from another commenter there:

If I need to ask a question, it is usually about a fine detail (one people should ask more often is how being autistic can complicate diabetes management, for instance).

Hear, hear. And, yeah, IME, it’s not always in the “obvious” ways–to those who have any idea what any of those might be, unlike the vast majority of health professionals. (See also Savannah’s good one on how difficulties with daily living skills are not always what people outside the situation would assume.)

I am currently having to manage my diabetes on my own, and it has been years since I was able to see a GP. I am hoping to find a new practice which will also let people book appointments online instead of over the phone (a definite accessibility issue for me, with my auditory processing)–and make sure Mr. U goes with me as an advocate–but am frankly still in too bad a shape from the D deficiency to handle it. (Kind of bad, when you’ve had reason to be more afraid of dealing with medical professionals when your coping/passing/verbal communication ability is decreased by being sick and/or in pain.) But, I stopped seeing the last GP over a pileup of circumstances.

Between the sensory issues and the medical PTSD–in large part, coming from shoddy treatment based on my acting “weird” especially under stress–I could not force myself to go back and wait four hours in a super-busy hospital area again to have blood drawn, for example. I actually set out for the hospital a couple of times, but just couldn’t do it. (The doctor’s office was not set up to do that on premises, and our local hospital is something.) I was also afraid of having a meltdown and maybe getting arrested and/or sectioned/committed–both trying to wait in Grand Central Station hospital-styley, and in the actual GP’s office–which is far from an irrational fear, under the circumstances.

And then I couldn’t make myself go back to a doctor who already had a demonstrated problem with listening to me, and get “noncompliant, irresponsible, blah blah” bawled out over not going for the HbA1c, etc., blood draw, while unable to verbally explain myself under stress. (And maybe get more very real health concerns dismissed because of my “craziness”–or at worst sectioned/committed because of, erm, acting weird.) Also, a hint: trying to motivate even adults without PTSD triggers which might lead to meltdowns by using “If these test results had come back different, you would be in hospital right now!”-type threats will not make many self-respecting people ever want to darken your door again. (Maybe, if you could catch me. Gimpy as I am these days. :-x )

And with no reasonable expectation that being able to explain would even help, even if I handed the person a copy of the NAS Patients with autism spectrum disorders: information for health professionals leaflet mentioned in one of the links above. (Obviously developed with kids in mind, and using some insulting descriptions–but much better than nothing.) Given some of the dehumanizing assumptions, I am not even sure I want to disclose to many doctors; it might actually lead to worse treatment. I have actually had to consider going for the PTSD angle, without mentioning the specific history of bad experiences in medical settings. (“What did you do to make my unknown colleagues treat you like that?!”)

Lots of inaccessibility that few people would ever identify as such. And I am very aware that lots of people would just jump to the same old “noncompliant, irresponsible” conclusions.

That’s beyond the basic stuff like having trouble remembering to eat, having trouble recognizing when my blood sugar is getting out of whack until I’m really feeling horrible and am less capable of doing something about it, etc.; I’ve been glad multiple times that I have Type 2 and am in a lot less short-term danger than someone who is relying on external insulin.

All of this is on top of the usual blaming attitudes around Type 2 and how that can affect the way a person is treated, and the near-impossibility of avoiding all kinds of crap that’s triggering if you have a history of an eating disorder, high lean body mass–not that treating fat people like that is right in any way!–and are already thinner than your body wants to be thanks to having trouble getting enough to eat for other reasons. Besides, erm, peeing out an awful lot of energy as glucose. (That is another post I started on a while back and fizzled out, prompted by having to start thinking about seriously reducing my carbohydrate intake, after more extensive glucose testing after meals to see how my body was responding to different things–totally for improved glucose control. Try finding much even diabetes-specific info on that without the purposeful weight loss elements thrown in. I dare you.) An excellent one, from someone who has done her research: You Did NOT Eat Your Way to Diabetes!:

Blaming you for your condition causes guilt and hopelessness. Even worse, the belief that people with diabetes have brought their disease on themselves inclines doctors to assume that since you did nothing to prevent your disease, you won’t make the effort to control it–a belief that may lead to your getting extremely poor care…

This line of reasoning leads to subtle, often unexpressed, judgmental decisions on the part of your doctor, who is likely to believe that had you not been such a pig, you would not have given yourself this unnecessary disease.

And because of this unspoken bias, unless you are able to “please” your doctor by losing a great deal of weight after your diagnosis you may find yourself treated with a subtle but callous disregard because of the doctor’s feeling that you brought this condition down on yourself. This bias is similar to that held by doctors who face patients who smoke a pack a day and get lung cancer and still refuse to stop smoking…

The message that diabetes researchers in academic laboratories are coming up with about what really causes diabetes is quite different from what you read in the media. What they are finding is that to get Type 2 Diabetes you need to have some combination of a variety of already-identified genetic flaws which produce the syndrome that we call Type 2 Diabetes. This means that unless you have inherited abnormal genes or had your genes damaged by exposure to pesticides, plastics and other environmental toxins known to cause genetic damage, you can eat until you drop and never develop diabetes.

Yes, genetics and epigenetics. (And I had multiple of the risk factors pointed at there, even before years on medications known to cause Type 2 diabetes. And, indeed, the burgeoning insulin resistance from that made me pack on an awful lot of weight my body had never carried before–regardless of causation, a shitty thing to base moral judgments on, especially if you are a medical professional.) A bit tangential, but I had to quote it anyway, because it’s so good; most of the rest of that page is research findings and commentary. There is also further disability intersection here, since if you act “weird”, they’re more likely to blame you for basically anything, dismiss what you have to say, and treat you even more condescendingly. Which would not make most people eager to go back for more, even without preexisting PTSD.
Back to the first part of that comment:

I think that if a person really wants to know what my experience of living for more than thirty years as an autistic child who became an abused autistic child, then became an abused autistic adolescent, and is now a PTSD-suffering autistic adult, they can learn it for themselves through simple observation. I find it far more productive to convey my experience of life through photography ( https://www.facebook.com/photo.php?fbid=281785741842039&set=a.101010559919559.2095.100000318462315&type=3&theater for example), sharing other peoples’ music (eg a DarkThrone song called Rawness Obsolete or just about any Made Out Of Babies song), or pointing out examples from film (the best one being, of course, Blade Runner)

I could definitely identify. Including with observation so frequently being the best route to learning about other people (beating the hell out of nosy questions!), besides feeling like various works of art often express my experiences better than verbal descriptions. (If not “of course, Blade Runner”, in my case. ;) And I am unfamiliar with either band he mentions.)

I’ve actually considered doing more photographic posts here, especially when the old “wrap words around ideas” module is on the fritz, but have hesitated in part because of the very directness. And my piss-poor photography, though that is mostly a handy excuse.

7 Comments leave one →
  1. March 6, 2012 2:45 am

    <3!

    I'm having some issues with my teeth and all the little things that are paralleling your comments on diabetes. Or it feels that way reading this. IDK, Words are hard.

    • urocyon permalink*
      March 6, 2012 6:03 pm

      Sorry that’s being a problem for you. :( I hope you can work something out before too long.

      I’m trying to give mine a while to remineralize more, before probably getting extensive work done. (It’s been 5+ years since I’ve been–and my teeth were obviously demineralized then, which somehow got turned into my not taking care of them properly. *scratches head*) Luckily, there is a dental anesthetic clinic specializing in nervous patients just up the road, which looks like it will arrange appointments online. Since my main problem there is past experiences of getting ignored when I don’t numb properly (goes along with the hypermobility, apparently–I don’t remember if you have that going on, too), sedation ought to work. And I know now to ask them to support my lower jaw for less risk of subluxation or dislocation! (A consistent problem, for most of the pain afterward.) I don’t know if finding a dentist who will use gas or sedation would help with your problems, and that does require a lot of spoons anyway when you’re already having trouble.

      Have you looked at http://www.dentalfearcentral.org/? (ETA: May be triggering. It was for me.) I actually found it useful for coming up with ideas for dealing with the other medical stuff, since there is at least more acknowledgment that (a) there are anxious patients, and (b) some of them have good reason for it. (Then there is the other side of that one, with its not being hard to find dentists who specialize in working with nervous patients. Unlike the “take whatever GP is accepting patients in your catchment area, and whatever specialist you’re referred to if you’re lucky” NHS approach here…)

      • March 6, 2012 6:14 pm

        I enjoy dentist appointments, I just can’t navigate the setting up there of or the dealing with people not getting how my executive function issues and other issues effect my dental care. Hopefully we will be able to come up with some strategies when I have a place to live, but I’m so tired of having people say I eat the wrong things, drink the wrong things, and that I’m being lazy with my teeth and that those are the reasons for tooth fail. I’m having some demineralization, anxiety related grinding that because my teeth align funny create ridges in the back of my teeth, and also gum stuff that might be partially related to hormonal imbalances, but I’ve had things progress so that what was originally just those issues are now also cavities and other things taking advantage of the weakened teeth. some of the demineralization and gum stuff makes it more painful to brush than to get the tooth yanked outright!

      • urocyon permalink*
        March 6, 2012 6:28 pm

        Aha. Not fun to deal with, either. I have also run into some executive function problems there, not surprisingly.

        It does, unfortunately, seem like blaming and lecturing are a lot more popular than trying to work with people and figure out what is actually causing the problems, in the dental profession too. My mom got abscesses and lost a bunch of teeth, largely thanks to meds she was on and probably osteomalacia. She got lectured and blamed over her assumed poor hygeine, until she actually saw a dentist who was aware that certain blood pressure meds will do that. I have been lucky so far *crosses fingers*, but I am afraid of something like that happening. A lot of people lose teeth from osteomalacia that’s gotten to the point mine apparently has.

        I’ve had things progress so that what was originally just those issues are now also cavities and other things taking advantage of the weakened teeth. some of the demineralization and gum stuff makes it more painful to brush than to get the tooth yanked outright!

        *nods* I can identify. My teeth are hurting less when I brush them now, but it was bad enough that I wasn’t doing it as often as is a good idea because of that. (Beyond just getting caught up in other stuff and forgetting.) I also have a longterm problem with tooth grinding, and canines that are badly chipped from that and ill-advised orthodontic work to try to help with the TMJ problems. (Hint: if someone’s jaw is staying subluxated a lot, that will mess with their bite–and make them grind their teeth to try to find a comfortable jaw position. Orthodontic work is not a good idea for people with HMS/EDS, in a lot of ways.) But, yeah, it all builds up and starts snowballing. :-|

      • urocyon permalink*
        March 6, 2012 8:13 pm

        BTW,for more general info purposes rather than a direct reply to anything, the study mentioned in the hastily found discussion of HMS/EDS and local anesthetics not working is an old link:
        http://web.archive.org/web/20040221105051/http://www.ehlers-danlos.org/Info%20Sheets/local_anaesthetics.htm

        I didn’t have the energy to look very hard for a newer version. Interesting stuff, though it is apparently looking very much like HMS and EDS Type III are the same thing. (As opposed to hypermobile joints that don’t cause chronic pain; it’s unclear what definitions that researcher was using.) What I’m dealing with really does sound like it’s on a relatively mild part of a hypermobile-type EDS spectrum.

        When we asked them more in detail, they reported that they had all previously experienced difficulties in obtaining a sufficient analgesia at the dentist, although they had been given substantial doses of local analgesics. Some of the women reported no pain alleviation of local analgesics when they were sutured after episiotomy. They were commonly characterised as hysterics. We have definitely proved that this is not the case.

        Yeah. :( No experience with the second thing there, but yowch.

  2. March 6, 2012 12:58 pm

    Re, colored spoons — I don’t know if you’ve seen this blog post by Amanda Baggs or if this is what you have in mind, but in case it helps:

    https://ballastexistenz.wordpress.com/2006/07/06/colored-spoons-and-social-codes/

    This is her own twist on the “spoon theory” with color coded spoons for different types of activities.

    • urocyon permalink*
      March 6, 2012 6:29 pm

      Thanks for the pointer. :) I’m sure I read that at some point in the past, and it was probably in the back of my mind. Good to reread, though.

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