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