Unapparent disability

Hi Pearl, The older I get, the more I watch the syntax my doctor uses.   If he says, “the test results were negative, so the test does not indicate that you have xxx.”  That is cool, and I can accept that.  If he says , “ the test results were negative, so you don’t have xxx.”  I usually walk.  Sometimes I will make a comment like , “so in the next 1000 years you are certain a more accurate test will never be developed.”   Virtually all tests have false positives and false negatives.   I have seen doctors debate if an X-ray showed a break.    

One of my big complaints about standardized intelligence and personality tests is normally not the test itself …. It is the way the tests are sometimes interpreted and the results applied.

Pearl Sutton wrote:I think the reason we hyper-react to new pain is we are already keeping so many pain coping balls up in our day to day juggling, it's quite a balancing act, having a few more balls tossed at us tends to cascade the whole thing onto the floor, and you feel ALL of the pain you have been coping with.  It often feels like that, like a tower of jenga blocks, that is holding still RIGHT NOW, AS IS, but if you mess with it, the collapse is incredibly painful. It's NOT easy to keep it balanced enough to cope semi-normally.

So. Much. This. With my EDS, I've become accustomed to incidental injury pains from my daily farm chores, on top of all my other chronic pain crud. It's almost become a joke; "Gee - wonder where THIS cut (abrasion, burn, bruise...) came from." Because it's SUCH a common thing, it's become just another part of my chronic mess. But, or dog, a beautiful, sweet, gentle Irish Wolfhound, walks buy, catches my hip with her tail, turns her head and we knock heads, accidentally catches me with one of those "battle-paws" during her zoomies, or steps on my foot, and I'm yelping, and sometimes even in or near tears. I think part of the reason the injuries while I'm working on our farm go unnoticed, at least until I bump, catch a glimpse of them, or notice a blood trail, is because they blend into the other stuff I'm trying to ignore, in order to get my work done. It seems to somewhat depend on how intense the chronic stuff is, in the moment.

Example: Today is Christmas Day. I'm dressed very pretty, with jewelry etc, even though the person I will see is my mom, because I have a lovely wardrobe and nowhere to wear it, so I dress up for any or no excuse. I have pretty house decor done, gifts all wrapped etc, food cooking. I look all in control and competent.  I also have some BAD flare ups going on, I'd call my pain/infection numbers right now 8 chronic, 8.5 acute. I'll make it through the day, will have fun.  All of the balls are in the air, and I'm keeping them there with my tricks I use for controlling bad days. But ANYTHING that sets me off balance would tank me right now. A neighbor stopping by to see the decor (I'm known to do weird stuff, and you can see the flashing lights in our windows) who washed her clothes in normal soap and fabric softener, and I'm GOING to be down, hard, and that's all there is to it. That would make all of the needles on the dials go higher than I can handle, and all the balls I'm juggling will hit the floor. It would take me several days to recover.

So when you are trying to put a needle into someone like me, who is in your office, holding it together, looking all in control and competent, that's what is happening, it's just one factor more than I had energy for or stuff with me to mitigate with, and all the balls fall all over the floor. Takes quite a while to get them all up and juggling again. And it hurts. And we melt down. Even if we try not to....  (and I hope the neighbors don't ask to see the decor, I'll text them a video....)

The issue is client centered health care verses clinician centered health care.
There is a current campaign  by some pain experts to  acknowledge that the client is the expert on their pain. The  clinician is only expert in posible causes and treatment that you do not have a problem it may be appropriate to tell them that they do not appear to be up to date on pain science.
I stick to the mantra that pain is the body's message to the conscious mind that something has to be do. ne different.
If you don't know what to do different. I am available for  line . see my signature line.

Also people are often not understanding of things like panic attacks... If you are having a panic attack and someone is criticizing your reaction, “Get off the floor!” or something to that effect, then it is really a worsening factor.

I had some bizarre comments on poor sleep but decided to move them to a new topic: https://permies.com/t/271620/personal-care/Beneficial-aspects-wakefulness-poor-sleep

Having to deal with various forms of depression and anxiety, as well as type 1 diabetes, I think I qualify. After becoming aware of some of these, I eventually started pushing back against them, and have had decent success with out-of-the-box advice and practitioners...meaning that not only am I still alive, but I enabled my body to clear up or back off some serious shit.  (Feel free to ask me.)

So, I have to say that a lot of hidden disabilities are a failure of the healthcare system, or rather "illness maintenance" system. Most health professionals mean well, but they exist in a system that can't even admit that healing exists, much less apply it.

Don't be satisfied by anything mainstream, always ask questions, and keep looking until you get affordable, meaningful, and sensible explanations and applications. You don't have to accept any chronic condition.

In the meantime, feel free to wear a sunflower so we can all recognize each other.