Sunday, August 28, 2016

Genuine care

*Disclaimer A*

It's overwhelming when a person is really, genuinely understanding of and kind to me, and they actually express this to me. This is especially so if they're in a position where I expect them not to be this way - when I expect them to be at least partially contemptuous, and likely oppressive, because I'm so accustomed to that.

So it's almost surreal when someone in my real life, beyond those whom I have sought out (and vice versa) in terms of specific community and common-experience-based solidarity, expresses genuine care and understanding towards me. I don’t just mean sympathy and pity, but empathic understanding, synonymous with compassionate reason, and expressed with a real motive to help me in response to my need for it, and that need has been adequately recognized. 

It takes someone objective, outside the box, open minded and also kind, to "get it" enough to truly care about people like me, I guess. You know, when I’m screaming “help me” in another language, that no one understands, until someone really understands, or makes an effort to try and understand, learning about it until they do understand, at least enough to help.

I’m talking about someone expressing a desire to be helpful to me, and not out of mere obligatory sympathy and pity due to my being, at this point, at least somewhat evidently "crippled." I'm talking about when there's an expression there, out of real care, for me as a human being with objectively profound, in fact agonizing challenges, as well as hopes and dreams, albeit all divergent ones. It's like Temple Grandins' mother said, to too view me as "different, not less"...but not only that, also to view my challenges as perhaps more difficult to understand, but just as worthy of trying to understand and help as anyone else's challenges. 

It's about not dehumanizing someone who is different and doesn't fit with the ordinary things most humans are and do. It's to, in spite, see that someone in a truly human light, though they may be an "atypical type of human."

This seems to be hard to come by today. It's a by product of the way the systems work, and thus the way society behaves, in broader terms that is. Sometimes a person will diverge from this, to find compassion for the "divergent." 

To diverge for the sake of a divergent, and thus to go against the common grain, to stick one's neck out even, is to ally, with love, with a divergent person. I'm so grateful for people who do. 

It takes me a while to process such a happening, and in the past, I hate to say it but I may have even pushed such a potential thing away. I would refuse to believe in it's potential; which is synonymous with the potential good in people. The potential empathy, even for something that they don't initially understand, but wish to try. I didn’t feel I deserved that, not deep down. That’s just how fractured my spirit had become, due to being gaslit

My heart swells out when it happens, and this makes me afraid that it'll break again, because it's been broken. My wings were cut off like what happened to Maleficent, during and after naively, erroneously believing that someone was enacting "care" in the way described above, when they weren't really at all, and in fact were out to do the very opposite. 

The last times that this happened to me, in 2013 and 2014 too - those were the final straws in really shattering my trust. After that, it was shattered all over the floor, and so was I, and physically too...and now, I'm trying to pick up the pieces. It's slow because I'm weakened. I've been broken. 

Sadly my first, seemingly primal instinct, is to be afraid of kindness. Yeah, I do know that it's not good, it's unfortunate, I wish it weren't so, and this equates with deeply embedded trauma, but that's how I feel. My poor limbic system. I have to try and recondition it, and even though living with (and really hoping to recover from) acquired autonomic nervous system disease now makes this prospect more crucial than ever - it's still easier said than done. 

What can you do when there is still feasibly a risk? When one is on such thin ice trying to retrain these primal instincts, and its like - one more traumatic happening could set you back a lot. So, you don't know when to really let it be and accept the positivity, without fear that it'll turn sour. You don't want to be hurt again…

But there's always a risk though, so the only way to really safeguard is to train to immediately detach, should it "happen" again. Should it "turn sour." This makes it harder, though, to take in and accept true care when it’s really there. It can be done, but finding the balance between being open and receiving, and aloof and guarded, is like walking a tightrope when you live with complex post traumatic stress damages. 


I don't normally speak about how vulnerable my heart really is, not on social media, and not even much overall. My heart lives within a sheet of armour which I made an effort to shine in order to present - and by the way - that effort being called “manipulative” and even "narcissistic" is like ripping my armour off my body and throwing acid on my gaslit burns.. because underneath it all, I'm scarred to pieces, and those burn scars are not yet healed, which is why I'm needing to wear armour... I have two phrases for those who criticize and insult the armour, and they are: "How dare you" and "if you only knew."

Some people in the autist community, who were messed up and anger-filled themselves, did that to me, and thus caused the second major "wing tearing" experience that I had in 2014. It was right before I had that awful stroke-like autonomic crash in the UK, fall 2014. It was extremely hurtful and made me wary of my own community forever more. I had been super open and naive in the autistic community, until that happened. 

.. However, in saying that, there were people who did care about me, who were good to me - but I was so hurt and gaslit about that happening, that I had a lot of anxiety about thanking the people who did help me and care about me when I got acutely sick. I fretted over not seeming thankful enough to them, and will they get upset and think they've been duped because "she's actually just narcissistic." I questioned whether I even deserved to be helped..and I struggled with that for months. Oy vey ! 

(When I say "wing-tearing" I'm describing a very hurtful, shocking and heart shattering betrayal experience that was not expected - and comparing it to the movie Malificent ie. when her wings were cut off in such a situation.) 

When it comes down to it, people can and sometimes do really hurt people because they're hurting, but it never makes it ok. Even if one is resentful of someone who "appears" to be doing better than them, it's never ok. You don't really know how fragile a person may really be, especially when you know them via social media only. You could be aiming to kick a brick wall when what you really did was kick in a terra cotta painted wall of mud and play, crumbling it to the ground. 

In this, any people, including autistic people who are hurting in a rage, due to their own traumas, should think twice before lashing out on and attacking those of their fellows who are putting themselves out there, ironically in an attempt to be helpful to people such as them. They should remember that things may not be entirely what they appear, and that in the public eye, on social media, people are expected to present solidly. If they are frail inside they may wear an armour of false pride shone with care...and there are a dozen alternate reasons for that than things such as "manipulation" and purposeless attention seeking.

I had to experience the sobering (and at the time, in my naivete, devastating) reminder that autistic people from my own community can be among people who hurt people, too. 

However and again, many autistic people were also very much there for me, and I do have so much gratitude, as well as reciprocal love and care for them. I will come back to make sure that it's these people I focus on, and that they'll know what I just said above, because I'll make it clearer to them. I'm working on believing that it's ok to accept it, for me to really express it, and turn it into something helpful for all. 

Anyways, I can only afford to take my armour off before those who I am sure will not throw any acid, or even blow any dust, onto my ailing burn scars. Maybe some will even offer aloe gel, or at look right past the ghastliness of how they appear, in their true form trying to heal but not yet healed, and smile at me unfazed, with true care. This metaphor reminds me of the scene in Patch Adams when Patch was in a mental hospital and was advised "look through your fingers, what do you see." 

I've only publicly verbalized a fraction of why the burn scars are there, and I mean to refrain from being more specific about it for the most part, other than the more broadened concepts, which are related to activism and community advocacy. I can't bear to be trolled via my most hurtful specific personal experiences being thrown back in my face, because that'd just be too much, and also, it's really only my business. 

The overall gist is that much of it happened because I'm an autistic rainbow zebra, because I'm different, both in my mind and body actually...and I didn't know that, or how to deal with it, how to really be in this world, how to assert my true self - how to be true to me in spite of ignorance born judgements, rejections and cruelty.

Then, when I found out how to be true to me, I wasn’t yet ready to handle how the devastating cons would play out, and in this my scabs, which had initially began to heal a little, were torn right off again. I was re-shattered. Because I was naive, and the world was, even just a few years ago, just as ignorant as I was naive.

It’s getting better, thanks especially to some grassroots efforts, and in this there’s hope for future “divergent” beings to be accepted initially, without first going through another minefield and having to fight for oneself when already scarred and weakened. But for now, sometimes, the land mines are still in the grass. 

Regardless, one needs a land mine safety suit, but which can still be pulled off when it’s really safe to do so. Knowing when to pull it off and not get too stuffy under it can be tricky, and that balance is one I’m still trying to achieve. When I find it, I’d like to write about that, too. 

I don't know what else to say, and I don't think I want to say anything else, since I don’t really want to be specific about what spawned this pondering, nor do I have the right words for that specific event. Not yet. But it's about letting someone be kind to you, in a way that could help you, though you're so not used to it and have been so gaslit in the past that you are afraid of it, too. You're afraid of the notion of someone really caring about you, I guess - but that's something that has to end. 


Ok, the end.

Wednesday, August 24, 2016

Divergent rainbow stripes, even way back when

*Disclaimer A*

It's funny because most people with POTS/dysautonomia have a hard time with showers, and they say baths are much better. I have a hard time with baths, always have. But showers help regulate me, even saving my butt.

It's very odd but, my body and I just dont like baths. Never have. I dont like the "stagnation" of them, they make me overheat very easily and get naustead/POTSy. Showers do the exact opposite. They help get my circulation "flowing" and it feels great, it helps my system better co ordinate itself, and massively helps pain, which is weird because most people with POTS have the opposite problem, and opt for baths instead. Not me. I diverge from even the typical zebras, no wonder I felt like such a lone wolf almost. But I know there's probably others out there, like me.

I take long hot showers and rub essential oils that work for me and thats what I plan to do today after I finish something up here. Oddly, the magnesium sulfates recommended for the bath make me itch, but I take magnesium bisglyconate internally, it's the best absorbed and helps muscle tension a bit, too. I already took mine with my stuff and feeling a bit better but hanging for shower and then some tape. and I'll be good after that.

I always sit down in the shower though. That might be important to to note. Standing up in the shower too much, or for too long, will fuel POTS for sure. As a kid, to correct my circulation, I'd sit in a hot shower for a very long time, until the hot water ran out, with my feet under the water, because my feet would get cold and turn white. I'd first curl up in a ball and then I'd stretch my legs out and let the water flow over them, then at the end I'd get my whole body under but only at the end or I'd overheat. I would stand up carefully and slowly as I let the water flow over me, to wash my hair and "stretch out" and such. I still do this today, and it does help. 

I guess I instinctively recognized that my upper body was too tight and "heated" in it's qi/flow, and my lower body was cold and stagnant. I realize now that I definitely had autonomic issues starting when I was young, and I just had these little autistic rituals to deal. I was clever and in tune and I would just do what I needed to instinctively and avoid things I knew would trigger me...

However, when school started things got tougher. The school system traumatized me so bad, not just because of the autistic negligence stuff, but because of the forcing me to do things that were offensive to me physically. Eventually we got me out of PE because I would get so upset before gym class I would vomit in the change room. Then I had to "log" my activities (of my choice) in a book. Only after a good many years of traumatic torture, bullying and unnecessary injuries though. I hope things so that our zebra kids won't have to go through stuff like this, and can just be "allowed to be" as well as welcomed, accomodated,  accepted and supported. 

What's amiss from the hiss

*Disclaimer A*

I just took a few mins to have a "chat" with a "bully" in our housing complex (as the kids have described) .. and not in the way he was expecting I'm sure. I was tough but, with purpose. I had him admit that the reason why he does this is he feels crappy about himself inside, but that making someone else feel crappy is only going to make things double-crappy, and a bit of why. I truly think he got it..and to be honest I was just a little glassy eyed as I shut the door.

Now, not all bullies are those who feel badly because they have "weak" points. It was somewhat easy to profile this boy because he has a speech difference and some other idiosyncrasies that he's clearly very insecure about. He aims to get to others first to retain his power before anyone has the chance to possibly hurt him. I told him that's not the thing that's going to help him, and there's a better way to do it, while still being able to stand up for himself if someone does try to bully him first. I think that clicked. 

But there are some, in fact many, bullies out there who may not be worth trying to "turn around" in any way, because they don't really have anything to turn around to in the first place.. they're just like that. The only way to deal with the above is to ignore them and thus starve their sadism. It took me a long time to figure that out... or, in some cases, stand up to them formally using strong fact and evidence, if this is absolutely needed (ie. systemic bullying) 

In order to not waste time and forks, it's about being able to tell what's "amiss from the hiss" - is it from an angry and hurting hot (and thus warm) blooded alley cat, or a calculated, cold-blooded reptilian type.. ? Lol...though sometimes trying to rehabilitate the alley cat is too much for a person...but, this is just an 8 yr old kid and a 5 min sum up conversation. It's worth the forks, even though I have few. It's so much harder when nobody says anything to "that kid" for years on end and he or she then becomes a very troubled adult. 

I hope I made some kind of small impact on this kid. I know at times when I was a troubled young person I was lucky and glad that certain people did and said things to me that made an important, positive impact on me. He's not my kid and I don't know him that well, so doing any more isn't up to me. It's up to "the cosmos." So mote it be, I wish him well.

-Rosie G. 

Monday, August 22, 2016

Sufficiently Astute

*Disclaimer A*

I love it when people are actually sufficiently astute. There are no words to describe the relief in which that feeling brings. For someone like me, this is a few and far between occurrence. I'm sure others who are neurodivergent and/or physically "zebra" will know what I'm talking about.

When you have matters, issues, traits, challenges, and whatever else, which "diverge" from the norm of "what's known", what's documented as "typical precedent" out there, and thus what's commonly known and understood by many, because you yourself diverge from that norm...well... living isn't easy.

Being isn't easy.

This stems from the fact that, often from the very get-go, one like this suffers from lack of hospitable, lack of accomodating environments. This is because there is a gross lack of proper solutions, and thus proper conduct, in order to make the accomodations truly needed. This starts doing damage, and that damage then causes a set up for more mishaps, which then cause more damage...and it rolls along and along like scar tissue, like a viciously pungent onion.

But then the onion flowers and produces seeds.

There is a lot of this in the world right now. A lot of pungent onions burning eyes to tears and spawning flowers then seeds. It's now more than ever.

Things are changing much more rapidly, especially in the last half century. Television, and then the internet, have had a pretty huge part to play in that. Regardless, old ways are still dominating, and for this reason it's a difficult time in the world right now.

It feels like we're in some kind of dark ages, approaching an increasingly desperate need for a necessary turning point. We could compare it with medieval times unto the renaissance. We are pushing forward, albeit with painful and brutal resistance which slows us down, but regardless, it feels like we are pushing forward towards a new renaissance.

I hope that I will live to see at least the beginning of this renaissance. That'd be my "ok, now I can go" prez. I'm one of many who feels like some sort of "change-breeding warrior", who feels a handful of seeds in their hands. They are seeds of truth, and it's a truth that will sprout into a "garden of the new renaissance." As challenging and downright brutal as my life, with it's barriers, has become in many ways, and as much as sometimes I want to give up - what I'm supposed to do about those barriers is synonymous with the act of planting these seeds. So I can't give up.

There's been many times when I've wanted to smash the jar and just give up. But then I meet others who either completely get it because they live it, or are our allies. I need to constantly remind myself of what I feel I'm here for. The latter people mentioned are those who are willing to get it. Key concept: Willingness. It's the first step out from, thus saying no to,  and thus standing up to a darkly, grimly infused mind-virus of cognitive dissonance. 

That mind virus is the thing that builds, guards and reinforces a brick wall standing between humanity and change. It's a wall built by those who not only want to, but need to, remain in power because it's the very essence of their existence. At least that's what they believe.

So when we gather the strength that we need to turn the wheel of change, and that wheel approaches the thrones, or bunkers, or castles, or whatever have you - they will either back down and surrender, or perish for that belief. Either way, they have to be stood up to, because the way most of are living isn't fair, or conducive to a reasonably joyous life. 

Enough of this being taught that life "just isn't fair." I don't believe that in it's entirety.. well at least not to the extent in which we are told to "just take it."

What we need to know is that those in power (and the higher up the more so) are to blame for keeping so many of us trapped and unable to thrive, and many die this way. But what we can do as we approach the somethings-gotta-give red line is we can stand up for what we believe in, and stand up to what we are opposed to, and be, and support what we agree is right. This takes courage. This is bravery. 

So, for those who don't want to be a "seed bearer" please, consider supporting your seed bearers as we walk this path. We are often weakened, injured, very challenged, and sometimes faced with obscene, seemingly impossible barriers, because that which seeks to quash what we stand for has targeted us from the very start...and they're good at what they do.

We who are "divergent" and "zebra" need support; through people's willingness to be open minded and brave. We need love.

In retrospect, and of importance to note, is that one of the seed bearers' biggest personal battles to overcome is trauma itself. The traumas caused by the above. They poison us, and many of us succumb to them, at least initially, but we can get back up. In fact, this is an ongoing process because, as much as it sucks, the "seed bearers" are the people who will get hurt, who will experience hardship and barriers, perpetually.

Again, we are targets, we are prone. But if you can look at your hardship, your suffering, your pain, your challenges, and see them as a way to learn something about it through how you overcame it - to make something out of it, and make something better out of it, to seek the right answers to abolish it, and pass all that on - Then you have become sufficiently astute.

By the way; this is ultimately necessary, and to those who really are "seed bearing", it will, at least somehow, and in some way, come naturally. It will feel very relieving, in an important way; a way that will be "the thing" in those moments where you might want to give up. However, and in retrospect, this will not make the journey easier overall (in fact, it could up the anti in the obstacle course, on the minefield.) Sorry to somewhat disappoint with that bit.

To re-emphasize that just as importantly, there are those around who have the potential to be willing to accept unique, complex and cutting-edge people and situations for what they are. Those who are willing to go, and learn, and grasp, and perhaps pass it on to others...they do exist, and there are more than we think. Some are hard to reach though, and it'll be up to you to discern who may be, or may not be, worth your energy to potentially reach. It's a hard one and it takes a long time to properly discern. We don't want to be too open, nor too closed off...

Many people who aren't necessarily seed bearers can become supports and allies to seed bearers. Referring back to trauma and this being one of our biggest challenges; In our trauma, one common error we make is, in our cynicism, missing out on recognizing who, out there, may indeed be our potential allies. They are out there, and there are many, if approached in the right ways - in ways not energetically-dominant in depression-succumbing anger and fear. A decent number of people will likely respond positively to reasonable approaches and exertions. Some will become thorough allies. As much as I've questioned these things when in depressively dark spaces myself, deep down I believe in this. I believe that most people are good. At least at the core.

But anyways ..

I got off an a tangent. Sorry. What was my point? Oh yeah. I'm exhausted. I hurt daily, to what degree 99.9% of all folks have no idea. I am battle-scarred all over and through, and today I live profoundly disabled by it, and, I'm still faced with cruelly intense barriers before me, without having fully completed my own mission here. But I'm still able, albeit differently, because I still have to get the "seed" in the soil. The ring in the fire. Withered and frail aside, the journey must go on, somehow. So the strategies will develop in any way possible to modify things, somehow....

and I love it when other people truly are
sufficiently astute. Basically, I love it when people get it. Yep. I feel a big smile and a "boom. thank god!" and, well, there are no further words to describe that incredibly alleviating feeling. In fact, I no longer have time or energy for direct contact with anything, or anyone else, unless there is absolutely no choice in the matter..and for that last bit, I've worked hard to build necessary armour.

So mote it be.


Rosie G.

Saturday, August 20, 2016

Being practically "allergic" to life.

*Disclaimer A*

Imagine if everything you did, and everywhere you go, is ruled by a slew of limits and need for modification. Imagine being practically "allergic" to life. It's a very hard way to live. It's exhausting, it's daunting. But in spite, for some, this is life. 
*Disclaimer A*

This young woman lives with Mast Cell Activation, a common EDS co-morbid, but occurs without EDS too, which is (other than gastroparesis) a reason why many EDSers end up on feeding tubes.
Having to limit and modify food intake to the extreme, and even having to give up on food altogether, crossing over to dependance upon medical intervention for one's daily sustenance, is one of the roughest things to go through. Currently, many of us are having to go through it. I know what I'm talking about because I go through it too, and I too am at risk for needing a tube in the future, for a few reasons, and I've been fighting those "reasons" tooth and nail for the past year especially. At this time I'm succeeding at preserving my ability to eat, albeit strictly limited and specific. I sure hope we find better ways in the future, via better treatments to target the sources of why the inability to process our foods.
No, this isn't a fun way to live. It's an incredibly difficult, painful, and tragically limiting way to live. Solutions must be found for these diseases, because in fact, this IS no way to live, and it shouldn't be tolerated. We can do research, more funds must be allocated somehow. Perhaps they can be raised..
However, we don't have these solutions yet, so we only have the power to change what we can, while working towards the change we want. In this, I'm glad this lady's able to be so optimistic. After all, what choice does she have? If not, it's easy to feel like you don't want to live at all...
This experience demands striving for an outlook of glass is half full. Easier said than done for sure, but in order to not predominantly hurt all the time, we *must* find reasons to live and remain optimistic..and we can. We still can, and we will. I know 'cause I do this every day.
In retrospect, there are moments and days where one will feel depressed, cry, be angry and want to scream. How could there not be? When those times happen, I believe we need to let it out. There is no shame in having strong feelings about this horrendously trying experience which some of us are dealt. In terms of natural human behaviour and psychology, it's actually normal. Furthermore, in of such a situation there is no need for slapping labels on it. Personally, I find that a little offensive, in light of considering the circumstances.
People who live like this are going to have depressive and angry moods sometimes. Just like when Brynns' parents say "some days she says 'I can't do this anymore!" If we didn't have those feelings sometimes, we wouldn't be human. Just as long as it's not happening most or all of the time, which could then be accurately classified as "situational depression" ..as understandable as that is.
We do have to let our emotions out here and there, as well as have personal outlets for it, while overall striving to fight situational depression, by seeking joy in any way we can, in any way we choose which personally works for us - while perhaps striving to increase awareness  ‪#‎forawareness‬ ‪#‎mastcellactivationsyndrome‬ ‪#‎mastcellawareness‬‪#‎chronicillnessawareness‬

Wednesday, August 17, 2016

Dear MedBiz

*Disclaimer A*

*Sighs* I just read another article which made me need to write a good little rant-letter to, well, I don't know ... but here it goes:

Dear MedBiz (and Dear Society, too):

It's not ok for a young girl to be suffering like this, and they're everywhere, much more than people realize. Believe it. No more denials. Please. We need societies' support. Stop denying. Read what she's saying. How would you like to be in her shoes? In her body. This is a girl who is very young, loves to cook, play music, has hopes and dreams. Now she can't even eat the food she cooks. She can't get out of bed to play music. She's on tubes, and bags, and 24/7 monitoring..and still..no one really knows how to fix her. and now her soul is breaking apart ..

Can you blame her?

This kind of stuff is happening to a lot of people, most of them young. YOUNG. We are your future. We are the now.

This is why medicals, and society, need to stop ignoring us, and in fact neglecting nearly all the zebra-bodies falling ill like this, unless they can somehow come up with the big bucks to see the few elite "come to papa, we have *right* the info" private practice doctors..

It's incredibly unequal, that only the zebras of the best financial means would get any inkling of a shot at quality of life...(but it happens with all forms of illness, I guess) and even then, sometimes solutions are not quite found. It depends on where you go, because every medical option you look at goats you, via saying it is they who have the answers, they who can help you. Of course. They're trying to sell you something. In this case, it's your quality of life, and even your life itself. It's a business. But can't it be a more honest, equal opportunity one? Given as though it's such a personal matter - you know - your life and all that.. it is kinda personal ...

.. because the other issue is that naturally based healthcare has far more answers that even the wealthy who choose top, but conventional, medical give it credit for. If the two sectors would just agree wot work together, rather than competing and poo-pooing each other, we'd have way more numbers in terms of successful recoveries and quality-of-life "reclaimings." Right now recoveries are minimal, and worse than that, very little regarding the deaths is talked about. So many are afraid of the truth. 

Turning a blind eye to the seriousness of this. Minimizing it with over-positivity which only sugar coats the truth, is keeping the wool over the worlds' eyes. 

The truth is that people are dying, and we need research. Badly. We need proper, honest communication. Badly. 

There are more "zebra-bodies" out there and being born, and more and more falling ill, sometimes even the children. Our ailments are not consistent with your textbook ranges. Ever thought of some open mindedness, and perhaps validating/confirming research, in terms of some of the ancient forms of medicine, tried and true, which metabolically body-type a person before considering their manifestation of symptoms.

Ever think ways of scientifically corroborating, and thus then incorporating holistic, integrative medicine, which is helping many people like us on the sidelines (when we turn to it, and if we have the moneys) would be a helpful thing to think about incorporating in people's conventional treatment plans? This way, we'd know more about interactions between the natural, and the manufactured, and be able to correlate it all better, reducing any possible risks. We'd see real recoveries. We'd see real life quality. We'd see real employability. We'd see genuinely "happy customers." Happy human being able to carry on with their lives with decency. We'd see a reduction in mental health issues. We'd see a better economy. We'd see a better world.

We are not cookie dough, we are people. Therefore, we cannot be cut into preconceived "shapes." In addition, the batter of the "dough" you have devised, to classify and cut into shapes, is evolving. It's changing in it's ratios of ingredients, being naturally "modified" to modern times. It's evolving. We're evolving.

The ailments that affected our parents and grandparents are beginning to diverge. Empirical evidence is demonstrating this. Stop using a mafia's worth of psychiatrists to call us mentally ill liars. Do the research. Develop solutions. Don't just systemically abuse us and throw us under the bus by defaming our characters if we don't just smile and take the torture. If we don't just accept the "soft kill."

It's not ok. It's not fair.

There ARE reasons..some of which are being covered up I am certain. It doesn't help to have ignorant "pro-sciencers" on one side, and just as ignorant extreme conspiracy theorists on the other. Everyone's left to wonder, and squabble... Well how about some real, honest, non biased investigations? Some real research. Some real accountability here.

Some things need to be uncovered, and will some "get in trouble" in the process? Maybe... and that's what's stopping things from moving along. The fear associated with the judicial system. (You know, the judicial systems' a biz too, so whose really in control here?)...

But too bad. It needs to stop. Do the research. Be accountable. Reduce the problems, with a plan of eventually eliminating the causes. Change the systems. Develop treatments that are both profitable AND actually helpful.

MedBiz, the "zebras" who didnt' matter are growing in numbers. We're not unicorns. We're real. We're zebras. We're becoming more common. You would think that with that we would be seen as a profitably large group of customers.

So in light of that, big MedBiz, tell your mafia members to GET ON WITH IT. Research. Educate. Accept what may have done/is doing harm, and eliminate it, and develop treatments that work. We're here for ya, waiting for some actually helpful treatments. We'll willingly take what will give us better quality of life without ten million unnecessary side effects some of which include death or near death, or an invitation to participate in Russian roulette, because it's easier than spending time/money pre testing someone to see how they will tolerate a treatment. How hard is it. Don't you want more people out there working, and less "burdening" on the system? Wouldn't that be ideal for a better economy? You would think so ..

and also, back to the, yannow, "human" part of this ..

People have a right to *some* quality of life. They also have a right to decency in terms of treatment and judgement, rather than being character assassinated for the purpose of discounting their validity and thus evading liability (or attempting to, it's going to backfire when we do stats on how many people are "diagnosed" with somatoform and factitious disorders .. really ..because *actual* cases of these disorders are not nearly as "common" as what will come back on paper post surveying.)

MedBiz, take responsibility, have an ounce of compassion or at least mercy - and find us the solutions - and for God's sake - get it out of the law that the terribly un-scientific psychiatrists' should somehow be at the top of the medical packing order.

Stop pussyfooting. Stop deceiving. If not, this will eventually be a lose-lose situation on both ends - when your "boycott" will come in the form of a "modern illness Black Plague" (EDS, POTS/dysautonomia/autonomic failure, autoimmune, mitochondrial disease, numerous genetic methylation cycle defects, etc etc etc) and you will not have the capacity to respond. Thus there will be masses of tragedies and heartbreak, and severely broken trust re: the medical establishment/s ..(not that there isn't a fair bit of that already) and when that happens in full throttle.. well, it'll be bad. Really bad. Why not face the music now, and look into real solutions rather than caustic bandaid slapping, backfiring cover-ups, before this all turns into a potential disaster? 

Dear MedBiz. People are hurting. People are dying. I know what I'm talking about because I'm one of them. Get over it. Get on with it. 

Acknowledge the lack of ethics, and be ethical. 

Rosie G.

www.girloutside.org