Stigma

[Denver Nobles]

Why does there have be consumer to consumer stigma when the very thing we have in common is our Mental Health diagnosis?

[Jerry W]

Mental Health Diagnoses are so varied, that they include Depressives,
and Manics, as well as Anxiety Disorders, to Personality Disorders
and Schizophrenia / thought disorders and most all combinations
in between...

Even among Depression and Mania/ Bipolar Disorders,
along the mood/ affect spectrum,
some find the happy annoying and the depressives,
well, a downer to be around. You would think that would
bring us closer, but on top of illnesses, getting along
with people, just as those with any other chronic,
acute or serious illness, does not seem to lend itself
to good relations, imho...

Some seem to be able to rise above the pettiness
and hatred of ourselves, and help others, but
at least for myself, I am not good at it,
as I've written some nasty stuff that I just
published thinking it was funny for April Fools
(and no this was not the writing)

Good question though...

[Jerry W]

There seems to be more stigma in the provider community
towards the dual eligibles (both provider and diagnosed),
according to some original research on the subject
(sorry can't quote it directly).

Oh, you're one of them mentalism...
Not that consumers/survivors/ex-patients
don't give it back... ;-/

[Mary Blake]

I don't think having a "diagnosis" says anything about who I am, what my values are, what my dreams are, what my life experience has been, etc. So, I don't necessarily think having a diagnosis provides common ground with anyone. I think that my experiences within the mental health system, my life experiences, my hearing voices or tendency to feel disconnected, my interests and passions and dreams...these are what shape common ground for me with others who have had similar experiences, dreams, interests, etc. And these things have nothing to do with diagnosis.

My view is that whenever we force people into a box, we open the doors for stigma. The idea that someone is defined by their having been diagnosed with schizophrenia (ie., a "schizophrenic"), or by having been trained as a social worker (ie., "provider") is dangerous. These labels are in many, if not most, senses arbitrary--it is not universally accepted as fact (not in academic realms or any other area) that "mental illnesses" are located in the brain. In fact, it is not uncommon that behaviors associated with trauma and trauma response are mis-diagnosed as "brain disease," and, unfortunately also mis-treated. It is also not uncommon for people trained to provide conventional services within mental health treatment (psychiatrist, psychologist, social worker, etc.), for these providers to face huge barriers in seeking help for their own trauma or emotional distress due to fears of losing professional licenses or jobs. Stigma occurs when we think we know about people based on incomplete information...ie, labels, diagnosis, appearance, behavior, etc. This is always dangerous.

Personally speaking, I find that almost anyone can be hard to tolerate when their actions encroach upon my personal space and my sense of personal integrity; I also acknowledge that this type of action is part of what it means to be human and that we all err in this. That said, I can't judge why a person is acting in a certain way unless I get to know them beyond their action. I might have assumptions about why they are doing whatever...I have found I am often wrong and must remain open to other possibilities. There are some people I might choose not to associate with...I don't think this has ever been due to "diagnosis." I choose to associate with people (and they include consumers, providers, colleagues, family, friends, entrepreneurs, and a host of other attributes) because of shared values, strengths, vision, passion, interests....knowing that there might be times that these people are annoying to me (and I to them, for sure). I also know we can be straight with each other, and that we will work it out together...eventually. My approach strives to be "Person-first." My own personal battle against stigma!

[Jeanne W]

Labels suck. Some of them led me to a great deal of pain. They can erect barriers to interaction and opportunity. Already unsure and vulnerable, those labels confirmed my worst fears. As my isolation intensified, my self-esteem imploded. I focused my anger inward, questioned my integrity, and my very identity. I survived only because I didn't know how not to. Then a nagging and unrepentant voice reminds me that, like generalizations, labels are an integral part of this culture's communication. Their misuse is common, and human. It is we who are responsible to respect ourselves and each other as individuals, avoid assumption, communicate with integrity, think and act with kindness, and use common courtesy. I also found that my experiences altered my personality, memory, capabilities, tolerance, and resilience. But every day is different, and any circumstance (or my perception of it) could change my responses and attitude, negatively or it might enable me to connect to an entirely new perspective. So I choose deliberate self-disclosure, and try not to allow the inevitable stigma to keep me from taking the risks it takes to grow. Our diverse, innovative approaches, our persistence and determination; our 'different' brains, these are precisely why being 'lumped in with higher functioning people' benefits everyone who brings an open mind or 'trainable' brain.

[Mary Blake]

Hi Jeanne: I'm not sure that being lumped in with "higher functioning people" benefits anyone beyond the surface. Unlabeled people do not have to contend with designations of "functioning." I agree with you about how we each have responsibility in how we view and treat ourselves and others. Sometimes, we internalize other people's assumptions and attitudes, which can have negative consequences. It does require vigilance and an ability/a skill of looking inward...of self reflection to tease these things out. Self disclosure is, in my view, a dicey things...should be handled with care. For the most part, I choose to disclose, but I do discriminate where, when, and how.

About "functioning", I wrote a poem once about that very thing. Here are some lines from the poem:

"...When you tell me, 'but you’re ‘high functioning now,’” is that an accolade? Should I be pleased? Well, what about the time when I fall and am not functioning “highly and mightily” at all? Am I a failure? Am I less than I was when I was “high and mighty?” And, when I get back to “high functioning,” am I as “good” as I was before? How high do I have to be to earn your credibility…where high functioning is no longer the point? What does my being a consumer or being “high” or “low” functioning have to say about who I am? What does it have to say at all other than what YOU want it to say?...."

Thanks for sharing your thoughts, Jeanne.

[Mary Blake]

Hi Jen -- thanks for your reply. Let me say that I'm careful to distinguish between "experience" and diagnosis. I have had several diagnoses over the many, many years...but that did not alter my "experiences." You may call it "illness," but even there, that is not the same thing as diagnosis. My history with mental health treatment has been long and tortuous...now it has come to a good place. My prognosis for over 15 years was very poor....for quite a while it was "custodial." What made the difference for me, how did I get out of institutions and into life? It was people who saw me as a person with challenges and with strengths...who understood that I needed to find ways that worked for me to overcome and at least live with my challenges and that I needed to tap into my strengths as part of my healing. So, for a long time I was considered "low functioning." Now I hold a very good job and have not been in hospital for 14 years. Yes, I struggle, yes I have challenges. The difference is that I've learned ways to cope.

I'm not the same person I was, I have changed, yes. But, part of that change is learning about how strong I am to have survived and to continue to survive (even thrive), learning that I'm creative and innovative in finding ways to stay sane in a wholly insane world, being able to establish friendships and supports that "get" me and that are truly "give and take." I don't need to pathologize myself anymore, and I certainly won't let anyone else do that anymore either. I choose to stay in treatment and am picky about who I work with...making sure that my treatment is strengths-based.

In my experience personally and professionally, if you expect pathology, odds are you will get it. Different people will development different tools and will reach different goals...but every one needs some hope...don't you think?

[Sylvia Matthews]

First Hi I'm Sylvia and Iive in Anchorage, Alaska Major Depression was my diagnosis back in about 1990
I should probably warn you, I like to talk so often my posts may be long.

I like how you've stated the difference between several words that are so misused by everyone, mental health professionals included. I think the most important lesson I've ever learned with this diagnosis is that I'm it's manager, I have to take care of me. That includes recognizing wen I need help and ask for it or don't push it away when it's offered. That might sound like simple things to do but those things hsve been the hardest for me.

As long as I'm seen as mentally ill the whole cosmos around me can change I've found lately that most people don't even see me as mentally ill because I have so many physical illnesses that they can't get past that to see that I can get very dark when a depressio is coming. I tend to think of the episodes as migraines, they don't come along very often anymore but when they do they hurt like hell and isolate me.

I don't blame people for their knee-jerk rections because they're merely copying the people they grew up with but I don't let them walk away without at least a talk about why they feel and act the way they do. It may be surpriing but most people don't even know there are harmful components in their conversation. In their rush to judgement of the people who are most like them, I think that many of those people feel they can't control themselve, it's the disease. they say.

I've been at this management thing for a really long time and living with myself is kind of cool these days. I'm still a little too dark to be looking for a partner besides that ship has saled, I'm too old and have too many things wrong with my body to even contemplate a relationship, I carry too much permanent baggage.

I take the love that's all around me and use that for comfort and connections. I even have a coupld of on line loves cool huh very safe. I write about love as it is probably the most important thing in the whole of life. It doesn't have to be have to be with a partner. I've been fulfilled by my friendships which I have allowed myself to have. It's management every minute of every day, I have a personal toolbox of tricks that work to actually make myself happy. .

It's convinient to blame a/the disease/s, medications for bad behavior. Then what happens is the people who lean on their dianosis for support grind down even the most useful resources until they are alone or in a hospital. There is nothing wrong with being alone but there are different kinds of alone. My alone is a choice, I choose not to bring things into my life that I know will cause me to have episodes or bouts of anger which can trigger bigger depressions, death seeking depressions. I choose life and I have to do it every day and I hope all of you do too.

Sylvia in Anvhorage

[Michele Ramos]

i am in a very unique position. i am a licensed clinical social worker who provides counseling and mobile treatment team services to clients with ".severe and persistent mental illness" i also am a survivor of panic disorder and depression that made me afraid to leave my house for almost eight years. i have two daughters who are dually diagnosed with panic disorder, one of them has bipolar disorder and both are in recovery from using substances. Their substance use was a way of coping with what felt like unbearable psychic and emotional pain. people are not their labels, they are just people doing the best they can to live life, with its challenges, joys and pains. some of the posts talk about other people being disturbing to be with sometimes , i think that is true for all of us. if i am feeling particularly anxious, i find it hard to be around someone whose energy or irritability level if very high, but in the role as a support person, i honor those feelings and make sure i center myself in my own quiet more purposefully in order to be present to the client. if i was out in the community, i might choose to go hide out or find a quiet spot! But, that is about me and my sensitivity to energy. i can manage to sit in an ER waiting to access someone, and trying to be a supportive presence, but i wanted to run out of friendlys yesterday when i took my son and his girlfriend out to lunch. too many people, way too loud!

[Mary Blake]

Thanks so much, Michele, for your candid thoughts. I agree wholeheartedly about people not being their labels and about learning to cope, finding ways to manage the challenges that help us feel better. Funny how, sometimes, we find ways to "weather" or get through the situation that makes us so uncomfortable...coping strategies. There is great strength in learning how to meet our own needs. What you told of your story is very powerful.

[Genita Love]

I think maybe we tend to look down on our peers whose functioning is at a lower level than our own...or perhaps there are those of us that are jealous of another peer whose functioning level is a little better than their own- for whatever reason. I could be wrong, but, I think those two reasons could be entirely possible.