Recent Horrific Experience

[Guest tearose]

Okay, so now it is appropriate for me to share. We do need to share to protect others from the occasions when we can be hurt, abused or damaged by "some" in the helping profession!

I briefly shared some of my ordeal in December. Now I am in the healing and resolution phase. I understand it is my choice and responsibility to "speak" for those with ANS dysfunction in relapse who do not have the strength to speak up for themselves. I offer this "protected" version of my letter for you to learn from.

Hospital Center

This is my formal letter of disagreement and disapproval of my entire hospital visit of December 2010. I have read the notes from my stay and there are many entries that are incorrect and misstated.

My Autonomic Nervous System Dysfunction disability was never taken seriously and I was not given the standard of care I should have received. The hospital had extensive records of my Lyme disease, and IV treatment, my Dysautonomia diagnosis and history.

I do not have nor ever have had a mental illness. The most serious mental health issues I have ever had to deal with came from my forced admission and forced medication as done by your staff in December 2010.

How could you not consider my ANS dysfunction, lack of sleep and fatigue? How can you have considered anything I said while totally exhausted and under slept while under the influence of psychotropic medications as coming from a conscious place in my mind???

Is it customary for your Department to ignore disabilities, stress patients, medicate them and then interview them? This is what happened to me.

I refute everything you say as being psychosis or paranoid behavior.

I called you recently and asked you to consider my Spiritual Life and ANS dysfunction as contributing factors to my experiences. Additionally, I believe anyone forced into a locked psych ward would have higher levels of stress and would exhibit some new stress not usual to them.

In this telephone conversation I asked if you had consulted any of my teachers or ministers, on my behalf. You said no. I asked if you understood that with ANS dysfunction in relapse, I experience heightened sensitivity and that plus being so fatigued and a student of Spirit, I felt misunderstood. You dismissed this as secondary to my diagnosis and instead asked “are you still in treatment?” I asked you to consider allowing me to bring in to consult with you, my Minister, Spiritual teacher, Psychiatric Nurse and ANS doctor in to discuss my condition and life as I experience it.

You have shown no open mindedness and resist accepting that I have an extremely sensitive ANS system and that I have very real and documented Spiritual experiences.

I am pursuing formal measures with the State department of Mental Health to investigate this horrific and unnecessary treatment you forced upon me.

Sincerely,

[corina]

dear tearose,

thank you so much for being such a special person, sharing with us your horrific experience. i am very glad that you have now gained the strength to stand up for yourself and let the people involved know where they went wrong. reading your letter i feel that in the end YOU will be the winner here, as you're a very strong person. treated really badly (or should i say poorly) you took the time to heal (as far as possible) and stand up for yourself.

deep bow and lots of respect for you tearose,

corina

[juliegee]

(((((Tearose)))))

I remember your experience well. I am proud of you for advocating for yourself. Have you sent the letter or are you asking for our input?

Lots of love as you recover-

Julie

[enko]

that's just horrifying

[Guest tearose]

Thanks family.

I have done the best I could to survive, heal and thrive. I cannot put adequately into words the violation and stripping of self, I went through. If not for my trust in a higher/Divine intelligence, for answers to my prayers for grace and strength, I would be medicated and locked away in some institution right now.

I vowed to resolve this by protecting others from having this abuse from some in the mental health profession.

Yes, the letter was sent to the State investigator and is in the process of investigation now. Letters, phone calls and support were also sent from my Minister, my Spiritual teachers, my Internist, my family and fellow congregants. Also important to mention, I consulted with a psychotherapist, who was appalled and apologetic for the whole mental health profession by this incident and finds I have no mental illness.

We must support the continued study and research Autonomic Nervous System Dysfunctions and NOT allow or accept our caretakers to jump to the realm of "mental health" issues when "regular" answers are not easy to find. Our voices need to be heard.

Without a doubt I did not receive the standard of care I should have and was abused. I could go to court but this is not my way of resolving things. I believe it is time for mental health professionals to become educated. We succeed in life when we use the tools of love, compassion and grace. I am trying to do so.

It will have all been "worth" the tragedy if I can save some one else who may be too weak to speak up.

thank you for allowing me to share and heal here,

tearose

[janiedelite]

Sending hugs, Tearose. Thank you for being so brave and standing up for yourself and advocating for others.

[juliegee]

Ditto!!!

[firewatcher]

(((((((((((tearose)))))))))))))))

I hope this brings you satisfaction and that you find the ability to forgive their ignorance. Whatever happened to "do no harm?!" I am thrilled that you have the support that you do. Stay strong and be blessed!

[songcanary]

This is the essence of kindness, Tearose, you unveiled your experieces to others so as to spare someone else the hurt. I applaud you.

[cordellia]

dear brave tearose,

your eloquence, your advocacy and the poignancy of your words inspire and strengthen me.

thank you for finding the courage to share.

with respect and admiration ~cordelia

[comfortzone]

They are blind Tearose ... the worst kind of blindness ...

While not certain of course - my best guess is that your words will also fall on 'deaf' ears.... Gosh why couldn't they get the full trio? Deaf, blind and dumb... But no - I would venture them to get speaking defensive, snarky and the like ... their issue - not yours - you are fearless in the spirit and they are fear-filled to the point of abject misery. Note - they are misery - not you sweet tearose in spite of your experience.

Life experience - wow we all have 'em don't we? There is another major area of misdiagnosis in mentally healthy adults and children for that matter - within the mental health field - and that is the life of those who have survived a damaging 'cult' experience. I would guess if you had to squeeze out a dsm 4 dx on those poor individuals it might be dissociative disorder nos or not otherwise specified.

In a cult the 'real' person is drilled out and the person takes on the persona of the cult leader/members - so they have a cult-self and a real-self. Those that escape the cult are in immense pain - and too often don't know what the heck happened to them, why and what they are to do with all of this pain they feel.

In seeking help with an ignorant mental health professional - often the high demand group (aka cult) or 1on 1 relationship as in a domestic violence relationship - is overlooked and not called out and identified as an issue causing phenomena that can be treated.

So the individual will often be viewed to be paranoid, depressed, anxious, and worse -- and are victim to the medication game. Med after med is given - some end up with a full passle of pills - 8 or 9 types perhaps - and curiously 'they don't improve or get better'......... Well imagine that - that is because that is absolutely not their issue at all! Then the poor victims who've escaped have all these phobias that were instilled to control their behaviour - and some are still behaving as if they were in the cult - it's just terrible - when meds are given for real life issues - so easy to tell a patient to pop pills and more pills and more pills - rather than investigating the events of their lives & getting to the bottom of issues...

And while not all cults are religious (business cults, pyriamid scheme cults, political cults etc.) a fair number are - so just imagine if the poor patient should mention that they routinely sleep on the floor and additionally pray at 3 a.m. for an hour and somehow believe that cult leader & his demands are normal like eating nothing for 7 days and the like .......truth is these people are often highly educated and recruited with techniques that make Mao look like a pansy.

Prolonged psychological trauma additionally can cause ANS problems. The fight or flight system 'on' full time for the entire time a cult member is participating - often years....

Tearose I only mention this to illustrate that the mental health system to my way of thinking - even in the best of circumstances - often comes up short for caring for individuals with symptoms and experiences outside the straight and narrow 'norm'.......be they in a fancy tertiary care center - a famous mental health facility - whomever - there are simply things that are not commonly known that cause people so much pain - and here comes the psychiatrist and counselors with their standard bag of tricks that simply end up rather useless. Worse than that - their standard routine care tricks applied to the person with exact specific needs - means the persons healing needs and care are denied or delayed from real helps that can heal them. True no one can know everything - but ...

BUT when will our doctors and nurses get over their need to 'be in control' and live out of a tiny little box of human experience that might just fit their life experience - they get depressed and put on meds - so that must be this patients problem. Or worse - give them meds and ensure to give them plenty - because that way the patient is rendered helpless - helpless because they are in a situation you created to keep them that way. Heaven forbid if they actually got the real counseling they needed so they could once again thrive in life...

They say retribution is a key element of healing - so I'm very glad you wrote that letter - though I know the idea of suing is distasteful to you .... you sure would be grounded - amen - to pursue things in a legal form.

Keep getting better tearose - write a book perhaps - our mental health system must change. I worked as a psychiatric nurse on a locked unit for two years....and while the system I was working in was a really good one - it was severely handicapped in that it wasn't forward thinking - it wasn't able to see outside the box..... I think personally they could do better - much better.

Candidly I too will admit that there are some unhealthy individuals in mental health who perhaps went into it subconsciously hoping to find a cure for their own very personal brokeness....we had some on the unit I worked on ... I reported them in a heartbeat if I saw or suspected any impropriety ... I'm a full on patient advocate when I work as a nurse for sure...no matter the discipline

May your healing path be swift -- in some sense you are lucky you weren't dragged around longer..... I'm glad this seems to have been one quick (very sadly near lethal) dart that you are dealing with promptly and appropriately with. I've seen it the other way - where patients are given ECT treatments (shock treatments) - again for issues I wasn't sure was the 'real' issue at all..

thanks tearose for your faith and courage !

[sandymbme]

{{{{{{{{{{Tearose}}}}}}}}}}}}}}}

Sending gentle hugs and much love and support. That was a terrible, frightening experience to go through, and I applaud your efforts to advocate for yourself after the fact. One of the most difficult issues facing those of us with "invisible diseases" is that it is just too easy (not to mention much cheaper!) to write us off as "mental health patients" or "drug seeking" or "hysterical". It is an experience none of us should ever have to go through, yet most, if not all, of us do at one point or another. While no where near the experience you suffered, I have had bad hospital experiences, and suffered through a couple bad specialists until I realized I don't have to keep seeing the first one my primary doc sent me to, and could ask for a new referral!

I will post a link here for the Joint Commission's Hospital Accreditation website. If it is not already posted somewhere on this site as a useful link, somebody tell me how to add it! They are the national hospital oversight board, and in charge of keeping hospitals licensed to practice medicine. You may find it much more effective, and cathartic, to file a complaint where it will carry some real weight. Your story definitely reflects a level of insensitivity, not to mention downright shoddy medical practice, that should be heard by those in power to effect change. Thank you for being so brave, and for sharing! As I am sure you know only painfully too well, sometimes the support on this forum, from people who know exactly what you are going through, is more precious than anything!

The aforementioned Link:

http://www.jointcommission.org/accreditation/hospitals.aspx

Sandy

[Guest tearose]

I feel this blanket of kindness and support from all of you and it is so very welcome, soothing and supportive.

Thank you all.

I return the love and am filled with gratitude.

tearose

[yogini]

You go girl -- I am optimistic that your complaint to the state is heard. Ask your insurance company to contest payment on the unnecessary treatment. Get them where it hurts! Let us know how it goes!

[potsgirl]

I can't add anything more eloquent than what has already been written. I want to add my support and strength to you and your mission!

[Troy]

What exactly happened tearose ? perhaps I missed previous discussions but why were you admitted into to hopsital and if I understood you correctly did they keep you there against your wishes and forced you to take drugs you didn't want? If that is the case thats really messed up. Sorry to hear what happened to you. How did they justify their actions?

Also what do you mean by "real and documented Spiritual experiences" do you mean like religious and mystical experiences? if so you need to be careful you don't go discussing such things with doctors and hospitals because they deal with science and medicine, spiritual experiences are something very personal its not something you want to share with the wrong people and non believers and people who deal with scientific facts, thats like preaching about God to and atheist, it can end up causing you trouble and people in authority can impose their own views against your views.

[Guest tearose]

Thank you for the additional support.

To answer you Endure, see the link to my late January thread. That will give you the history. It took until three weeks ago for me to finally know how to respond and to be able to put into words what I needed to say.

going a bit deeper since we all have various ways to cope with chronic illness and disability...

I am now done with being a "closet mystic". It is through my growing relationship through prayer and meditation that I developed most peace and balance and management of my ANS dysfunction. I know how to manage with compression, electrolytes, activity, rest....I know my blood pressure, my heart rate, my temperature, how and what foods will digest best...I just had to learn to survive! However, because I became so "intune" and became very aware of what all was going on in my body, I also opened up to what was also going on outside my body. It was and is my relationship with what some call, Spirit, God, the Divine or basically, that which is not self, that came into question recently.

I have no question we all have various ways to heal, seek peace and practice our philosophy of life. My "right" to share the fact that I have ANS sensitivity/dysfunction, and that I am a student of Spiritual Practices should not make me a candidate for psychotropic drugs!!

I am done being tolerant of doctors who believe that "Spiritual" people are delusional. I also know that my body had a very dangerous reaction to the one dose of two medications they forced on me. Fortunately I only had to wait on the locked psych ward one week for the trial. The judge was appalled and I was immediately released.

I hope to hear from the investigator soon and will let you know what the next step is.

[55baron]

I am just saddened by your story!

My daughter who after being diagnosed with gastroparsis and POTS, went to the "great" mayo clinic. They totally dismissed her diagnosis' that she came in with and went on to diagnosis her with there own version.

Psychiatric of course.

I'm appalled to hear of this happening. And I have heard many, many stories of the same type of thing.

Why do rare illnesses bring this on??

I'm grateful you are recovering enough emotionally to share your experience! I hope you realize how you are helping others! Others who have silently been living with the same type of treatment! Everyone needs to develop a strong disposition to be self advocating. You are a good lesson for all.

CONGRATULATIONS! AND THANK YOU..

Cathy

[ladyt]

you are very brave tearose... I havnet read your story , but after typing this i will...

The medical comutetys need to open up thats for sure.And many docs and nurses are religous people. And having a sientific mind isnt the problem as i see it. Cause if one have a reall sientific mind one will now that facts change, what we learn evolve evry day.. A growing sientific mind should be open and curiuos, and humble. Back in the 80 s a stomac ulscer was considerd stress and a menthal issu. Many whent truo very unnesserary treatment. Then its turned out to be the heliobactera that was the culpit.

We humans have great need for order and feeling of controll. We like to fitt things into neat small boxes. We have to work against our nature more, stay open minded and be awar of our own limtations...

Closness of the mind and lack of curiosety needs to be adressed..

But agan I am very sorry to hear about your ordeal, and i think u very very brave tearose. I worked a lilte in a mental hospital way back, how anyone could gett better there i had a hard time understanding.

I hope u gett some feeling og closure, and i am greatfull for u standing up to the unfairness... Sorry englsh is not my first lang, so hard to find the rigth words to express what i feel..

Ps i read your story, thats ust very very wrong..

[comfortzone]

While it may not seem fair to have to tip-toe around physicians and healthcare personnel about yours or their spiritual beliefs or religious tradition - the truth is it may be wisest to just say nothing about it at all. I mean you can of course speak to these realities - but you are at risk for 'labeling' and being taken down a road you have no place on - such as on a locked psych unit of a hosptial. How I wish this weren't the case....

If after a time you and your clinician have developed a certain level of familiarity and kinship - and you trust that something of this nature will be treated with respect - then it's less risky.

When I was looking for a surgeon for my joint replacements I would speak to my patients about their experience with their doctors - more than one patient told me of the 'ways' of one surgeon - and that was that he always offered to pray with them. I liked that level of humility and sought out that surgeon for my care - and we did pray together in the office and hospital both on multiple occasions. When he himself had to battle cancer - I prayed mightily for him and he ended up having a good outcome...I was so grateful. It was nice to be able to be on the same page during such vulnerable times in life...

But unless the clinician is of the same spiritual openess ~ I would agree that the combination of odd symptoms with the addition of 'religious experience' or 'spiritual experience' -- as in mystical phenomena - it might be better to save that part for the spiritual director and leave the doctors and nurses out of it.

I wish it were different - but it's my experience that we are vulnerable enough with dysautonomia without sharing of mysticism ~ which could put some people over the edge.....and lose perspective. Which sadly it seems happened here...

For years as a nurse we're trained at any 'new employee' orientation about being respectful of all religious traditions and practices and how we are to call the pastoral counselors anytime day or night for patients in spiritual crisis etc... But fear is fear and my best guess is that people that are ignorant about things they haven't been taught or experienced will abandon all openess and peg you as someone with 'issues' .... People throughout the ages have undergone prejudice and worse for having shared their mystical experiences... this is nothing new for sure.

But if you are done with hiding such things from people/caregivers - then you get what you get which may not be optimal - it's a hard road I'd imagine - only the person knows what's best though - it's a personal decision for sure.

[Troy]

Of course you have a right to speak about your interests and whatever else your passionate about but still you need to avoid talking to the wrong people about it, you can discuss your mysticism with freinds with your spiritual leaders and with likeminded people but I agree with "nowwhat" that "we are vulnerable enough with dysautonomia without sharing of mysticism". These so called doctors show enough scepticism and misunderstanding to our medically diagnosed illness of Dysautonomia let alone acepting the idea of mysticims and spirituality.

I am also a very spiritual and religious person but those are two topics I never talk about or debate in public unless they display some understanding of it, otherwise speaking to people who have never had a religious or spiritual experience will only think the worst of you and thats fine too if their opinion didn't matter but the people you spoke to had authority and power to do things that caused you grief.

They didn't have a right to do what they did just because they didn't agree with your views and I hope you can are able to seek justice and have them punished but in the future for your own safety and peace of mind you should practice a little more caution knowing there are people like that out there.

[juliegee]

Miss Tea-

Please feel no judgement, but this is what I was going to recommend as well. Every time I go to see a new physician, I feel defensive and "on guard" until I can tell whether or not they "get" it or think I'm bonkers I have so many rare, difficult to diagnose conditions. If the doc is willing to learn & tries to understand, I consider him/her hired....and in time, at an appropriate juncture, might speak about my strong spirituality.

I'm speaking as a mental health professional and NOT defending the doctors that did this to you. It's awful that we have to be so careful not to be misdiagnosed as having psychiatric issues, but this is the world in which we live. If a doctor can't DX you within five minutes, he's taught to consider a somatic illness. What makes it worse is that MANY of our symptoms overlap with those of mental illness- tachycardia, anxiety, fatigue, etc. Two subjects that are red flags for physicians are God & fear. (The fact that they are perfect opposites is not lost on me.) What may be a normal spiritual life to you (and me!), such as meditating or praying in hopes of connecting with our Creator; might be perceived by a physician (whose trying to size you up) as a patient with religious delusions having auditory/visual hallucinations Additionally, expressing any fear is too often perceived as a patient with paranoid tendencies.

I can only site abstracts, but oodles of journal articles have been written about this subject. Some psychiatrists believe that any religiousity or spirituality IS in itself a psychiatric condition . Google "Religion & Mental Illness." You will get MILLIONS of hits

This is wrong, but we have to have a heightened awareness that our doctors, especially if they are NOT aware of our medical condition(s), tend to suspect somatization disorder. In a perfect world, our doctors would have knowledge of dysautonomia (& the conditions that cause it), believe us, and help us. We all know that this isn't always the case. Because of this, I am very guarded until I can tell whether or not a new doctor is trying to understand and help me. I am very hesitant about revealing anything that could potentially be misconstrued as a symptom of mental illness.

What happened to you is horrible. I have seen it happen to others with dysautonomia & those with GI issues secondary to dysautonomia. I would love to see an expose written that exposes this practice for what it is- an extreme violation of the Hippocratic oath and violation of human rights. The general public would be shocked to think this could happen in this day and age. I wouldn't dismiss the idea of suing the hospital or this doctor too quickly. I know it feels immoral to go after them, but it may make them think twice & prevent this from happening to the next patient- at a cost to yourself.

I hope you are seeing a supportive professional to help you through this process. You were badly violated through no fault of your own. My warnings are meant with love, not judgement. I am proud of you for standing up and advocating for yourself after all you have been through. As you heal, you will remain in my thoughts and prayers, Miss Tea.

Gentle Hugs-

Julie

[Guest tearose]

Thank you, I appreciate and take into consideration all you are sharing and cautioning.

[Guest tearose]

Update:

The investigator told the hospital to call me. The hospital "rep" called and said I can put a letter to my file that is an addendum and that they stand by their their interpretation of signs and symptoms.

This is not a resolution at all. I only became "off" while taking the medications. They don't want to learn or hear about dysautonomia or spiritual experiences.

And remember, I was without restorative sleep, worn out, starting ANS relapse, and with headache...who would imagine that sharing the importance of my spiritual life at 1 in the morning in the ER would force such actions upon a person? I never said or did anything weird or dangerous!

This is part of my medical history now and will be in my insurance files and so beware...YOU could be forced onto medications that alter your conscious awareness and then be considered delusional too.

It is a sorrowful day...I am holding on the the fact that I am home while I knowing that someone else is suffering right now forced onto drugs and into oblivion without any way back to their life.

my heart is aching.

[juliegee]

No apology? Nothing? Let me guess, you get to pay for it, too? ?? My heart aches for you

Only you know what is best to help you heal. If you feel strong enough, consider going to the press and having the hospital exposed for what did to you. Trust me, that will cough up an apology AND may prevent it form happening to the next unsuspecting patient. Another route is to bring suit against them. I am very opposed to frivolous lawsuits on moral grounds, but this is NOT frivolous by any means. You went there for help. You were vulnerable. Not only did they NOT help; they harmed you and grossly violated your civil rights. I'm guessing an attorney would take your case on contingency- meaning they would be paid (a percentage) only when you win your case.

So sorry, Tearose. I really have seen this happen to other patients with dysautonomia. It is deplorable and shameful.

Hugs-

Julie