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 only person I will see is my mom who I live with, 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.

Eric Hanson wrote:I thought I would add a hidden disability that hides in plain sight.  That disability is—disability, as in being forced into taking disability.

When I went onto disability, I did so kicking and screaming.  I did not want to go.  I tried every legal maneuver I could think of to avoid going, but ultimately I had to go (I was evaluated by a fitness-for-duty specialist who I still think was determined to see things that weren’t there but that’s another issue).  At the beginning of my time on disability I absolutely climbed the walls, bored out of my mind but humiliated about going outside as I didn’t want anyone to actually see me on a school day just being at home.  I paced the halls until I eventually just quit.  At that point I just sat aside much of the inherent ambition that I had as a young man.

To come back, I had to be evaluated again, this time by a different evaluator who was more charitable towards me.  He approved me, but warned me about how difficult it can be to restart after being of duty for over a year (and two in my case).  And he was right.  The world moved on.  Upon my return, I noticed that many of the teachers I worked with had left (mostly retired).  Students didn’t know who I was and the administrators and walked on eggshells around each other.  

And I only came back to teach psychology.  I was pleased to know that there was a pent-up demand for psychology in my absence as my designated substitute, while an excellent history teacher who I thoroughly respect, had absolutely no experience in psychology and was completely unprepared and unqualified to teach it.  I actually took more than a little bit of satisfaction from these events as the administration had always assumed that psychology was just a class where we all sat around and talked about our feelings and therefore anyone could do it.  The administration (with whom I had become quite frustrated) actually had to cancel psychology and for the first time in over four decades, psychology was not offered.  Suddenly, they needed me.

But my insomnia was still severe.  I could have terrible nights and fake my way through an hour.  It was not until late spring of 2018 that my insomnia finally subsided enough that I felt capable of coming back full time.  I planned on mentioning that the next year, but that of course was the beginning of COVID and lockdowns.  I did tell my administration that I was ready to come back full time and their response was basically that they just wanted me to stay as only a psychology teacher.  They reluctantly admitted that I had a right to come back (a right defined by law and contract!) and they strongly suggested that I come back to two sections (1 psychology, 1 U.S. History) first.  I accepted so as to not make waves.  The next year I told them that I was ready to come back full time and the superintendent insisted that it would be better for me to ease my way in as there was no reason for me to come back full time unless I was trying to “run up my retirement” but that I was not near that point.  At that point I insisted that I needed to finally restart my career and that I had been too convenient too long.  Reluctantly, they reassigned me back to full-time status.

But I did make the best of those not-quite full time years, partly by finishing my graduate work and maxing the pay scale, something that took effect this year.  And this year I have a student observer and next semester I will have another student observer who is scheduled to be my student teacher next spring.  Not every teacher gets a student teacher.  I had several before my insomnia consumed me, and I am extremely pleased to be getting them again.

But for all of those years, just having been placed on disability in the first place ostracized me from my co-workers and even now, some effects from that time in professional purgatory still raise their heads.

Eric

It saddens me that there is such a stigma around being unwell.  Especially when the world around us is making us unwell (human causes).  Many disorders can be chalked up to chemical imbalances.  Humans are literally made up of water, chemicals (hormones), and electrical signals.  Mess either of those up and you mess up the person.