Wednesday, March 25, 2009

Stigma, Advocacy, and Having a Really Rough Time of it: From Guest Blogger Retriever

Roy wrote about the NAMI mental health report card by states, Maryland got a "B." The post got a heartfelt comment by Retriever, and I'm borrowing (with permission, and some minor typo editing) that comment to use as a guest post. Retriever writes:

Stigma limits advocacy. The main one is that patients who are trying to pass as normal-- to hold onto jobs or not embarrass their children-- can't lobby politicians, educate peers at work or at church, because, if they have a family to support, they can't risk outing themselves.

We have a kid who is autistic and bipolar. High functioning, but spent nearly a year when 8 psychotic, manic, a danger to himself and others, with no meds working at all for him. My husband was laid off from a job because his company would have had their insurance rates doubled if they continued to keep him on the payroll and insured, because of our kid's diagnoses. Mental health care is expensive.

People still judge mental illness, especially in kids. Social workers at least initially assume that the parents are abusing the kid. Neighbors and coworkers assume that the child is ill because of bad parenting. Parents would actually like to blame their own bad parenting because that is actually under one's control as, say, mania is not. They'd be happy if they could just go to a course to improve and Junior would stop seeing snakes and hearing voices.

People like cute, grateful pitiful victims to help. The reality is that people pass the hat to collect money for a piteously bald kid with leukemia and his family, but nobody ever passes the hat for a psychotic eight year old whom the hospital will not admit because (I quote) "your insurance will only pay us 60 per cent as their reasonable and customary charge, but DCF pays 100 percent. " Hence the kiddie psych unit having 95 per cent DCF kids.

Increasingly the move is towards care "in the community" and to closing public facilities like the state hospital that saved my kid's life (when manic and psychotic) because it would actually admit him and keep him there long enough until he was no longer a menace to himself. Where I live (one of the richest communities in the country) none of the private clinicians are willing to treat severely mentally ill children, so one is sent to a child guidance clinic which limits the care and usually provides it with cheap, relatively new social workers who can barely spell the name of the diagnosed condition let alone have any expertise in it.

And my state got a B.

I do what I can in our church, to educate the SS teachers about how to work with our many kids with various mental health issues (we are the most hospitable in the area to them, and bend over backwards to include them, provide one-on-one shadows, and make equal demands of them so that they are not marginalized--this approach was what most helped my kid). And I talk with parents of the newly diagnosed kids, and badger them to take the various special ed courses on how to do battle with the school system.

But it's a drop in the bucket. You can't talk openly about the truly appalling behaviors of your beloved kid, or people would never feel comfortable around them. You can't tell people why it makes you yourself hideously depressed. You dread any phone call from the school lest it be the dear sweet Buddhist teacher telling you that Junior (hypomanic despite meds tweaking) just told him to STFU.

Most of all you can't testify publicly, or write except anonymously or lobby or preach (I am a former minister) for real parity, and greater compassion for these reasons (to recap):

  • The ill child (and their siblings) are entitled to anonymity. I am uncomfortable with all the mommies writing first person accounts with their real names. I wonder how their kids feel? It may be therapeutic to the mom, but could mortify and increase prejudice against the kids.
  • Employers lay off people with high insurance costs, although they do not admit it. Sometimes, if one is a valued worker (as I have been), the employer will look the other way. But in cost cutting times, if one advocates publicly, the bean-counters at HR will find a way to get one axed.
  • At least with pediatric psychiatry, the shrinks really don't know how bad it is or how much stress is on the family or the other kids caring for violent, manic, agitated kids at home. They don't care that spouses lose their jobs because of having to keep picking up an agitated kid from school, or stay up all night with one and getting too many phone calls at work from MDs.

Community care is like all the " I want a pony" stuff back when people abolished the snake pits in the fond hope of lovey dovey community group homes, etc for the mentally ill. In reality people said NMBY, there weren't the funds, and it is actually harder to prevent abuse and bad care in group homes than in large institutions.


Aeriena Eve said...

Like any post with insurance in it, I am a million times grateful my family immigrated to CANADA.

Anyway, stigma limits everything, but the sucky part is advocacy could limit stigma. My parents are loathe to me even mentioning my connection with mental health, which means there are a whole lot fewer people out there who could have learned more about mental health!

Cut to the point: stigma blows, and contributes it it's own growth. Ugh, stigma.

Aeriena Eve said...

*Sorry, a whole lot MORE people out there.

Anonymous said...

Wow, Retriever!
How awful! I don't talk about my own experiences with the mental health community for the same reason you mention: stigma. I am worried about getting a job and being treated by other people as "normal". After my hospitalization I told very close friends only., about 16 people who accepted me as normal as soon as I looked normal again.

How awful to be going through this with your child.

Retriever said...

Aeriana and Anonymous,
Who knows how to break out of the stigma holding cell? It's a bit like the bargain with Rumpelstiltskin: to get something one wants or longs for (acceptance) one promises the impossible,has to give up something precious (honesty).

Anonymous said...

I know Retriever. However, I have made the deal with myself that I will do something when there is less personal cost to myself. Right now I am completing student teaching and a teaching credential program and then I have to get a job in a tough market and wait 3 years for tenure. At a certain point I will be in a position where I can speak out AND have a career that I want.

Ironically the little nonsense "word verification" is nonesti !!

Anonymous said...

The subject of stigma is near and dear to my heart. I recently experienced my first episode of severe depression and was hospitalised for 5 weeks. I needed a further 4 weeks off before I could return to work. After 9 weeks away, I faced the dilemma about what to say on my return and decided that I was going to be open about it. I was blown away away by the number of people who would share their own experiences of mental illness with me.

This motivated me to write an op-ed on depression and stigma based on my own personal experience. I wanted to show what the lived experience of a mental illness is like, and what we can all do to shed the stigma of depression. Titled an “Illness that should not be hidden”, the
article was published a couple of weeks ago in the weekend edition of our major broadsheet newspaper (our equivalent of the NY Times).

Again the response has been overwhelming. I have received too many emails to count, mainly from people I don’t know. People have been sharing their stories with me and congratulating me for “coming out” so to speak. Yes I was numerous and apprehensive about being so open about my experience in the public domain, but the response has been affirming and well worth the risk.

BTW: I am a semi-regular on Shrink Rap but under a pseudonym. I decided not use my pseudonym for this post as I didn’t wasn’t to “out” myself as I prefer the anonymity that a pseudonym offers in posting.

Anonymous said...

Oh God, don't even get me started.

I always feel vague guilt over being able to hide what I am, just because I am lucky in a lot of other ways, when so many others can't. And I leave them behind, to the jokes of other doctors, to society at large...

I think even more than not having the disease, I'd rather have it and erase the stigma from society.

Although I guess I'm not doing my part, since about this subject, I don't even blog under my regular blog.

Anonymous said...

Sadly, it's not only mental illnesses that carry this sort of stigma. I have MS, and people/employers treat us the same way! When I add my depression history on top of my MS, well, let's just say this is why I feel like I live my whole life "pretending" to be someone I'm not. It's tiring, and shameful to feel like you have to continually hide who you are! (Not to mention the fact that I can't even GET insurance because I have MS!)

Aeriena Eve said...


I stayed stock still in my stigma cell for four years, and then I realized that my family isn't everywhere. So I give up my honestly around people I'm related to, but don't hesitate to educate elsewhere.

It's kind of like coming out, you test the waters, check for danger, then take your time and come from a confident place. Oh, and have a backup plan.

Kinda like a slow revolution, huh?

Retriever said...

Agree, Aeriena, and think the analogy with coming out is useful (tho risky as people will sometimes snarl "Apples and Oranges") because it captures the risks and potential benefits of honesty. I am honest with people from church (who, tho sometimes freaked out, love us all anyway).

Anonymous said...

I was wondering if anyone is familiar with the Treatment Advocacy Center in VA? My grandparents have been very active advocates in the mental health field since my aunt was diagnosed with schizophrenia (after many years of my grandparents being accused of being 'bad parents' and her as 'out of control') and subsequently committed suicide. They have hosted a weekly support group for families of the mentally ill for over 20 years in addition to endless volunteer, fundraising and advocacy work. Of late, they've become very frustrated with bureaucracies that fail to achieve change, particularly in the area of de-stigmatization. They recently learned of the Treatment Advocacy Center and have since been involved with their efforts as they believe they are the only organization they've ever found that 'gets it' (Nana's words). Just wondering what others think of them (I know little about them).

Shira - CABF said...

Excellent post. I'm webmaster for the Child & Adolescent Bipolar Foundation and this really gets at what I've heard from a lot of parents of kids with bipolar.

I've heard of the Treatment Advocacy Center and am on their mailing list - IMHO they do important work, I like that they deal with a wide range of advocacy issues affecting folks with brain illnesses and their families.