The Stigma Of Mental Health

[pat57]

Dr. A Low, founder of Recovery inc- self help mental health- has noted that patients feel the stigma of a mental health DX.

He is echoed by many.

http://mentalhealth.samhsa.gov/stigma/

http://aiken.augusta.com/stories/052704/new_1029057.shtml

http://aiken.augusta.com/stories/052704/new_1029057.shtml

http://aiken.augusta.com/stories/052704/new_1029057.shtml

The facts about mental illness

oThey are disorders of the brain that disrupt a person?? ?hinking, feeling, moods, and ability to relate to others. Just as diabetes is a disorder of the pancreas, mental illnesses are brain disorders that often result in a diminished capacity for coping with the ordinary demands of life.

http://www.cnn.com/HEALTH/library/MH/00076.html

http://www.sonyasones.com/spteachers.htm

I do not fully understand why generally speaking a mental health DX is received so poorly. If whomever was told by a Dr. I think your thyroid is not functioning properly- would "whomever" receive this DX as negatively?

In both cases it is the result of clinical appraisal , or appraisal of symptoms. Does it really matter if POTS presents like depression as opposed too- say-

poor thyroid function? Is the one not as valid as the other?

As for me, I don't think incorrect MH DXs are because of any lack on the Drs part, I think its more because it just fits.

On the other hand a Dr. "should" use testing as a process of elimination when several DXs are possible. Med response can be diagnostically invaluable .

Obviously not every condition has relevant diagnostic tests. And then obviously a mental health professional is part of the diagnostic system.

Is he not? The point being to come to a correct DX and thereby effective treatment- if there is any.

Agreed?

I feel like folks generally think a M H DX is rooted in the Dr. having a poorer opinion of the patient. I do not agree with this. I think it is rooted in the Dr. experience and is the opinion based on clinical appraisal , or appraisal of symptoms. And being sent to a psychiatrist is in the hope of proper treatment.

I have - like others- received the MH Dx. Mine- pseudo seizures.

Then again THERE ARE EXCEPTIONS, this is why I say "GENERALLY speaking a mental health DX is received so poorly."

[Ernie]

Hi,

Mental disorders are rejected per se because the affect behavior, the affect, mood, though pattern, mental process and or belief system.

[sally]

*

[pat57]

Thanks for the replies. I think I get your point Ernie - that should have been obvious to me - silly me.

I am a big believer in an interdependent relationship between the physical, emotional and spiritual attributes of man.

I also think its one touch job to pinpoint causes of illness because of the huge number of possibilities.

[Mrs. Burschman]

I believe there may be too many physicians that might be in too much of hurry to diagnose a mental illness instead of further investigating the health issue and assume that mental illness may be the sole culprit causing the particular symptoms, out of frustration on their part.

I agree entirely. I think way too many doctors fancy themselves psychiatrists.

And, unfortunately, there IS a stigma against mental illness. Look at the way it's treated differently by insurance companies. I am a firm believer that a brain disorder shouldn't be treated any differently than a body disorder (or one that involves both), but at this point in time, it is.

Amy

[pat57]

The correct course is to test for the other possibilities- I think- and use a process of elimination. Except- I also think its valid to be referred to a

MH specialist the same way a person is sent to various other specialists - to confirm or rule out things.

[morgan617]

How often is a mental health diagnosis made by a non mental health person questioned? In my experience...zero. And even with documentation that I have a "physical" disorder, I am still diagnosed only with mental health issues. This tends to cause my negative attitude about this.

Say I am depressed, say I have OCD, say I have a mood disorder...but also say I have valid physical problems and I am fine. Question the all or nothing diagnosis and I can accept that. But that has not been my experience and it has caused me unending suffering. No new doctor will take me on, no specialists will see me. Not one questions the fact that everything wrong with me is psych. Even with letters from a real therapist telling them they are wrong. My primary said my therapist was "arrogant" for saying I did not display any signs of conversion, but he said the neuro that diagnosed every single health problem I have as psychogenic, "brilliant." Am I the only one that sees a double standard here?

I understand the mind body relationship....it's the doctors where I live that don't. That is the problem for me.

[pat57]

Have Drs. tested you for conditions and illnesses? This is what my Dr. told me is done. First rule out (or confirm) through available tests for whatever it could be.

That's very odd that the specialist working in his field is considered the arrogant one. And the one that makes the dx outside of his field is the considered brilliant one. The specialist is supposed to be deferred too. I thought.

I don't think that is "good practice".

I am really sorry you have gotten the short end of the stick.

Is he offering you any guidance for the problem- as he sees it?

[morgan617]

They don't even return my calls anymore. They do not give me the results of any tests, even when I ask. They won't even do any tests, unless I beg. Or order and pay for them myself, then he can't get the copies from me. I can't get in to anyone else. The guidance is, ignore her and maybe she will go away and/or die, and we won't have to mess with her anymore. I swear I am going to have to die for them to believe I have ever been really sick. My obit will say, She died of conversion disorder.

Sorry, but having a lot of problems with doctors here lately, or forever. My primary did talk to a kidney guy last fall and he said there couldn't be anything wrong with my kidneys, with NO testing and having not even seen me. They won't find anything if they don't test will they. My cardio refused to give me an event monitor for my new arrythmia, stating my pacer will pick up anything of significance. (sustained 180 or above)

I used to get tested for stuff, there is a lot of documentation of heart stuff. My ANA is high, no follow up, my cortisol stim test is abnormal, no follow up. I had a 24 hour EEG that didn't show seizures, the neuro said I was destroying all the lives around me with my mental illness (I know I don't have seizures and knew before the test) and that was the end of everything, until I contacted the MDA and didn't need a referral to see their doctor. She runs the muscular dystrophy center in this area. She did muscle stim tests while I was paralyzed, which clinically proved a major problem. I take enough potassium to kill a horse. And I still got conversion on my last ER visit.

Know why? I have myotonia (sometimes certain muscles are flaccid or very weak, sometimes they can't let go of things, they become frozen) I had taken hold of the bed rail, because I thought I was going to fall, and I got myotonia in my hand and couldn't let go of the rail. This is very common with my disorder (think the jaw post on the other side) however you can't possibly have PP and myotonia according to ER docs, even when you have researched published papers that say it is common. Even when you have a specialist that verifies, in writing, that you have it. Even when there are over 30 genetic mutations that have been found to prove it's existence. If you have even a basic understanding of how potassium works within the muscle cells, it is quite easy to see how your muscles can be flaccid or stiff, depending on what the potassium is doing. (Trapped inside the muscle, or leaving too quickly)

I read everything I could find on "true" conversion disorder. It is estimated to be one of the most misdiagnosed mental health disorders. Psychiatrists agree, it is incredibly rare occuring in about 1 in 1 MILLION persons. If you read sites where non psychiatrict doctors write about it, it is very common (that should be a comfort to the instant psych doctors out there) but if you read what is written by actual mental health professionals, they are apalled at the number of people misdiagnosed. The neuro proudly told me he diagnoses 2-3 people a WEEK with this disorder, so I shouldn't feel alone. I live in a city of less than 200,000. That means my city has the highest number of conversioners in the world. We ALL live here.

My primary's guidance, as he sees it, is it's easier to do nothing and call the neuro/instant psych "brilliant" and my therapist of 16 years "arrogant" and pretend I don't exist anymore. Do I sound a bit disgruntled here????

We can't even pay our bills, so going somewhere else is out of the question, and besides, when Mayo, NIH, Vandy, and Rochester, NY saw all my "psych" problems, I got letters stating there was no reason to see me. Even with documention of POTS, TTT's, ablation, all the symptoms. Because I seem depressed rather than sick. I had an ER report say I wasn't very animated, my affect was flat, therefore he deduced somatization. I had no idea we were supposed to cartwheel in to ER's and entertain them when we were sick as a dog, or else we are obviously faking it.

I went from 150 pounds to 98. I told my gastro I couldn't swallow, choked all the time and everything gets stuck. I eat beechnut baby food. He started to dilate my esophagus more and I have gained a few pounds. (about 10) There are times he can't get the dilator down that pipe. However, the last time I saw him, he said I "apparently" seem to think I have swallowing problems.

I am not sure how we are supposed to deal with this stuff, when every where we turn, we are treated like this. I so envy so many of you. The ones with doctors who may not understand, but listen and try to help you. The ones who don't immediately fall into the old cycle of well, if you weren't crazy this would be easier, syndrome. I laughed out loud at the last doctor who asked if I had been abused. I said "yea, horrifically, by doctors."

I have become quite the burned out angry old hag in the last couple of years. I guess I have finally gone off the deep end and just need to admit that "brilliant" neuro is right. And when the day comes that non psych doctors (who believe they can be psych doctors, with a mere snap of the fingers) show one iota of compassion for the mentally ill, it will be the day I drop dead of conversion disorder......I think a button may have been pushed here, or it's still the estrogen problem, that I have been told isn't a problem. It's in my head.....morganzilla

[sally]

Sorry to hear that you've had such a run like that.

Is this what you have? http://www.emedicine.com/neuro/TOPIC308.HTM

You don't sound like an angry hag as you put it, you sound frustrated with the medical system and how you've been treated in general by them trying to find out what is wrong with you. I think this is a perfectly normal response in this situation by someone. I've seen people go from calm to angry in less of a situation so I can imagine I wouldn't expect any less from myself if my whole life was a challange while battling professionals trying to get answers at the same time.

Now that you've been diagnosed with further investigation with a problem like this, do you see any specialist(s) who deal with this type of problem? It sounds like maybe your primary doctor is just not equiped with the knowledge or energy to deal with this type of thing and what it requires and you need to see someone who has the knowledge for this type of problem. Have you contacted the support group pertaining to this problem for help? I'm sure you've done everything possible, I'm just asking. I read a board on what is listed above and numerous people on there stated they've also had terrible problems during diagnosis or having great difficulties getting one spite testing being done. I think when it's not the mainstream illness, some of the professionals just don't have the time, knowledge or energy due to patient overload to deal with things properly.

Best wishes and hope things improve for you soon.

[morgan617]

Yes Sally, They (the board I am on and the doctors in Germany) believe I have the Andersen-Tawil form of this. You can be hyper or hypo or both, which does make it more difficult to treat. I fit the physical description, and the heart problems, along with the paralysis.

Do you find it as amazing as me, that you found this info in a couple hours, and there are no doctors here that can find it at all? Even the MDA doctor believes there are only two types and no genetic testing available. She refuses to see me more than twice a year. I am the second case she has seen in 25 years of practice. I do understand why doctors can get frustrated, but I don't get why they can't believe. I am working with a doctor in Ulm, Germany, if you can believe that, to help find my gene mutation.

For instance, if you read the article, the occurance is 1 in 100,000, making it relatively rare. True conversion disorder is 1 in 1,000,000. My doctor told me PP is too rare for me to have it, but conversion disorder is not. It has 3 more zeros than PP in it's rarity. But he doesn't have to treat conversion disorder, or prove it. He just has to say it and it's Gospel. But you have to test for and do various things for PP. I guess the decision on what to do is a no brainer. He gives me enough potassium to kill the average person on any given day, but will not commit to the diagnosis. My gastro called and asked him if this was for real (because I now require a potassium IV during procedures, which is a "pain" for him) and he said, he had no idea, but for now, he guesses he will treat me like I do. Then I wonder why my gastro treats me like he does....

To make this even more ironic, the neuro that killed any hope of me finding any more help here? He went into neurology because he has a brother with Muscular Dystrophy. PP is under the umbrella of MD diseases. He stated I "unequivically" did not have PP, because my potassium did not drop enough. It states clearly in every article about PP, that you can stay within the normal range of serum potassium levels, because it's not the serum potassium that is the problem. It's the way the potassium works within the cells, not the blood.

Thank you for posting that. I am sorry, that was a major vent and I really try not to be reactionary (mainly because it really wears me out). But it is also very off putting at times.

However, being blown off is too. Thanks for your support on this....sorrymorgan

[pat57]

morgan,

I need to spend more time on a reply but for now.

Your Dr. has no plan for your wellness re the DX on conversion, what about the neuro? I may have missed something- I'm sorry.

With a DX the patient gets a treatment plan. Yes?

I have had addiction problems and depression I also have hepatitus C from IV drug use. Drs always had some kind of treatment plan

for me, phone numbers etc......

I'll be back, have to let my daughter on right now!

sorry didn't mean to push your buttons. I can see how the topic would tho considering what your going through.

[sally]

If you haven't already seen this take a look, it has some interesting information you may find helpful.

From what I read on a foundation site is that any flux in potassium would cause a problem in people with this problem but didn't state a quanitity of drop or increase. That is definetly a problem having something that is rare, there is not enough information and physicians that treat or understand what is going on within this person with a rare disorder or illness. Keep searching for another doctor online that deals with type of problem that can see you more often when needed and dump the doctor when you can that causes you the grief because it sounds like you'll never convince him no matter what you do or say and he sounds like he is certainly not worth the energy.

Best wishes to you and hope you find answers and solutions real soon. Many blessings sent your way.

http://periodicparalysis.blogspot.com/2005...-in-pubmed.html

http://www.periodicparalysis.org/PPA/Physi...B_SECTION_ID=28

And, hey don't appologize for venting.....people need sounding boards...

[morgan617]

Sorry Pat, the neuro refuses to see me, because he doesn't treat conversion. My primary thinks the the neuro is brilliant and has taken him off the hook, so to speak, to do anything else. So, he now refuses to give me referrals, or do sleep studies, try new meds, or anything. If I want to try a med that might help, he refers me to the MDA doctor, who says she wants my primary to keep track of meds, who says she should do it. No one wants the responsibility of the consequences of my reactions to care..like meds and stuff.

The MDA doctor believes all you can do is lower salt intake, (I don't eat salt ever and haven't for years and years because of inner ear stuff) and lower carbs. I tried one med, which she started at the highest dose, no arguing with her or she will drop you, she has plenty of patients and doesn't need a trouble maker. It almost killed me, but my Primary ok'd it, because she ordered it. He did that knowing full well how sensitive I am to meds, but he wouldn't have to take responsibilty for it, as she had ordered it. When I didn't tolerate it and couldn't get a lower dose, she stopped it and said, that's it, nothing else I can do for you. He said, well if she can't help you, what do you expect me to do???? Oh I don't know,... listen?

I have asked for and been refused 3 other meds, that are for this disorder. By the way, almost everyone I've met online with PP, has autonomic dysfunction, so I have been teaching them things. They seem to be very intertwined, especially the type I have.

There is no plan, treatment or otherwise. My primary says I'm probably going to have a cardiac arrest, and there's nothing to be done about it. Unless I get an internal defibrillator, and my cardiologist refuses to do that. No plan, no treatments, I guess the plan is to sit here and wait for my conversion to dissipate and be 100% better or have that cardiac arrest and croak. Now there's a plan of treatment for you.....

Sally I know the person with the blog and the other one is where I got the info about Germany. Many thanks! I feel I have attempted in every way I can to get help and educate doctors, but I am just too tired to fight the system here anymore. I have hit my last wall. I have depression, major. I have become very apathetic, which pleases the doctors no end, as they can use it against me. And if I fight them, I am non compliant. When I first joined this site, I was full of fire to get to the bottom of things and fight for my rights and get to doctors, but I have declared defeat. The MDA doctor refuses to send me to a clinic that treats this disorder, at no cost covered by MDA, because she knows what she's doing.

I'll live with my illnesses and my "stigmas." I looked at the pictures of you climbing those rocks Nina, and I thought Man, I wish I could climb the stairs! I am happy to see you are doing as well as you are. I truly am happy for the people that function on a fairly normal level. I think, I could climb stairs, it's just all in my head and I really believe that. Then I climb the stairs.....

[corina]

pat,

in my opinion it?s not just black or white. there is grey in between. what i mean is: eventhough patients at times cannot be diagnosed by doctors, that doesn't mean they are physically healthy. there are always diseases that are just not (yet) known. it also happens that treatment plans that were prescribed earlier, now (that doctors have more knowledge of it) seem to be totally wrong.

there have been a lot of times that i thought that my disease had to be mental as it all seemed so very strange, but then i was sure that it was not. finally, when i had already given up, and had planned to just beg my neuro to let me try some medication, i was diagnosed with pots. i didn't care about a name, i was just happy i could try the meds. my husband told me that it was better to have a name for what was wrong with me as i had to deal with all kind of instances and he was right.

i am sure there are a lot more diseases that are not yet "named". that does not mean people suffering from it have a mental disease. i think this feeling (knowing) of being misdiagnosed is what causes frustration about being diagnosed with mental disease. it shuts all doors to get the right treatment and possibilities to get better (if possible of course).

corina

[pat57]

corina,

thanks for the reply. I do understand that there are many conditions and illnesses still unidentified. It has been my experience that a Dr. will just say- we don't know. If it mimics a MH problem then you might get the DX of MH.

It has also been my experience that you treat what ever the DX is, obviously including MH illnesses and conditions. Just as with the physical you expect to improve with treatment. You expect to respond to meds if they are the right meds for the problem, again just as with any illness or condition. Response or lack off can be an indicator of correct DX.

I did have a DX of pseudo seizes - from a cardio - neuro- psychiatrist while in hospital. As instructed I followed up with psychiatrist who sent me back to a neuro. So- no doors were shut for me.

I have also been DX with depression 2X by my MD and both times improved without medicine making changes in thinking patterns or life situations. With the later I was lucky that I could make the changes, some things can't be changed. A 3rd time I was DX with depression that was a major depression and I got on the meds ASAP and hung on til it was up to therapeutic levels. This 3rd one was a reaction to chemo so I needed meds and not changes the antidepressants worked.

I have great respect for anyone battling major depression as it is beyond words.

Then as I have mentioned I have been addicted to a couple things and got treatment for that- also conciling . I know what it means to

"white knuckle". Which is to battle your own impulses with clenched fists.

Through all of this I did not feel disrespected and on the contrary well cared for.

I think I am going to have to just understand that others are not as fortunate as I am.

I have noticed that EP offices are a bit strange. They really do not want to see me. I think because they have so many patients. Also tho, my first 3 EPs moved. Weird- huh? I've seen the last 2 once. So maybe its just they screen new patients? My MD is not really comfortable treating my NCS.

Oh well.

I appreciate everyones replies. Its helpful ,because it is appearing, that I am not understanding what others have experienced.

[morgan617]

Man I guess you are lucky! Be very grateful you don't live here!

I have never smoked , drunk, or done drugs, been addicted to anything, had an std, nada, nothing. I worked 36 years of my life, non stop, went to college, have been in a long term stable marriage, raised two great kids, And I get treated like crap by almost every doctor I see.

I guess it can be hard to understand, if you haven't experienced it. I'm not sure I would know how to feel or what I would do if I was treated well. I'm very glad you have had such good care Pat. It's nice to know there are people out there getting the care they deserve. Sorry if I sound defensive, but sometimes it's easy to say, do this or go there or try this, and you have, a million times. I am pretty defensive, just because I am invalidated at every turn. Someone on another forum told me I just don't try hard enough. Good grief, I don't know how much harder I could try, so then you are dealing with invalidation by someone who's supposed to understand what you are going through. It becomes self defeating when you have to defend yourself to people with the same struggles, who just happen to feel better than you.

I am not getting my esophagus dilated again after the next one on the 4th of February. You'd think the fact that I have gained 10 pounds since it has been done regularly would attest to the fact that there's a problem, and the procedure helps.. The fact is that he sometimes can barely get the dilator in and still refuses to say I have a stricture. Somehow, under sedation, with a spray that completely numbs my entire throat, I still seem to be able to conversion a tight spot he has to wrestle with. "brilliance" will win out over "arrogance" every single time when it comes to me and that is not a fun thing to live with......and it makes me even sadder to know I am not alone in this. I think you are actually a minority here....... morgan

[pat57]

Yes.

I was wondering where you live, I wish you could see my Drs.