Psychiatric needs: stigma, disinterest...why did my post sink out of sight?

[Ladyhawk]

A few days ago, I posted about problems I am having (and many rural Californians are having) finding decent psychiatric care. Those of us with Medi-Cal are not allowed to go out of the county and are stuck with no real psychiatric care to speak of. It's been this way for years and I sometimes wonder if my life could have been different with the right medications.

Interestingly, about the same time I posted about this problem, I also posted about a purely "physical" problem: a fibroid tumor. I got many responses. The thread about my inability to procure psychiatric care sank like a rock. I can't even find it through Google search. Maybe it was locked or removed. Maybe I just couldn't remember the right search terms. Regardless, no one seems to want to discuss a problem that must be affectingly thousands of Californians.

Yes, there are tons of other problems, especially in California, but isn't this at least as important as a fibroid tumor?

Why the silence?

Stigma?

Disinterest?

Just because?

I don't get it.

[EFerrari]

1. Imho, it was just the time, Ladyhawk.

Late at night, it's harder to get traction. If you repost it, I'll help you keep it kicked. :hi:

[Ladyhawk]

18. Could be. I just don't know. nt

[Tangerine LaBamba]

2. I didn't see it

You see to have stated your problem with getting psychiatric care rather succinctly here. Perhaps people had nothing to add. I very seriously doubt any kind of stigma would attach to a post like that, not here at DU.

What sort of responses did you anticipate? I don't live in California, and finding that kind of medical help is not familiar to me, but that's about all I can offer you.

So, what were you looking for when you posted it, besides just getting it off your chest?

[Ladyhawk]

21. We need to do something about it.

Obviously, we Californians have a lot on our plate, but changing the Medi-Cal rules regarding seeking psychiatric care is important.

How would a person even start?

[Tangerine LaBamba]

26. My first thought is

that you should get your story to the media. It's a touching personal interest kind of saga, and its implications, especially now, are enormous.

Imagine starting out with a line like, "I had nowhere else to turn, so I posted to a message board, and even there, a collection of liberal, compassionate people, no one cared."

See how you can make your story intriguing?

I'm sure there have been all sorts of incidents resulting from the inaccessibility of the psychiatric services that are needed. See if you can find out about such things, about the people involved and what happened to them.

I'd contact any organizations in your area that represent lower-income people, and see what they can do.

I'd find out, through the local Bar Association, if there are any lawyers nearby who do poverty law and see if you can find one who knows what you're talking about.

Mostly, though, I'd try to make your story public, and that means local TV stations, radio stations, newspapers.

How's that for some quick thinking? See anything that you might use? I surely do hope so.

Good luck!

[Ladyhawk]

30. I hesitate to share for obvious reasons.

I started to write something here, but it's making me feel ill.

Honestly, no one seems to give a shit in this county. If I wrote about the things that have happened to me, a lot of the local population would blame me.

[Tangerine LaBamba]

31. So?

Are you going to follow up on any of my suggestions? You asked for help, and I offered it.

Did any of the ideas resonate for you? You can do this anonymously, you know, so there's no need to be afraid of condemnation.

I worked hard to come up with those thoughts. I hoped they might give you a start.

If not, well, then, I'm sorry.

[Ladyhawk]

33. I hope you're not offended. It sounds that way by your tone.

Just because you offer up an idea doesn't mean I have to pursue it.

The problem with your idea is that the people who would be telling their stories are both sick and stigmatized. It takes a lot of energy to 1) share these stories and 2) deal with the resulting fallout. Offering up extremely personal stories for public ridicule isn't first on my list of ways to address the problem. I doubt others in my situation would be terribly keen on the idea, either.

I started to type out one story and got so upset it made me physically ill. Also, on this forum I'm very likely to be attacked for sharing. It's happened before.

I was simply trying to point this out to you and even that much seemed to ruffle your feathers, so I highly doubt sharing a personal story would be safe here or anywhere else.

I was thinking about asking my counselor about ideas...perhaps a petition to change the Medi-Cal guidelines would work better. It's straightforward and doesn't require me to put my emotions on the line for anyone.

[Tangerine LaBamba]

34. I intended no "tone"

I was serious when I responded to you with everything I could think of. You had asked for suggestions, and after seeing how dismal you seemed with no one paying any attention to your prior post, I wanted to try to help in any way I could.

Now that that's out of the way, let me point out to you that I never suggested you write your own story. Go back and read what I posted. It was to contact people who might know what questions to ask when confronted with your problem.

There were other suggestions that I listed. Weren't any of them any good? I'm not hurt, and my feathers, thank you very much, are fine. But when someone explicitly asks for suggestions on how to start solving a problem, I think they should, at the very least, consider them.

Reading your last line - about not wanting to put your emotions on the line for anyone - makes me realize I completely misunderstood what you were writing, and for that, I'm sorry.

[Ladyhawk]

36. Kicking. nt

[Veritas_et_Aequitas]

3. There's a DU group dedicated to living with mental illnessses, too.

The downside is you need to donate to access it, like all the DU groups.

[stray cat]

4. The majority of threads sink -

[cbayer]

5. Here is a link to it.

http://www.democraticunderground.com/discuss/duboard.php?az=show_topic&forum=389&topic_id=5035675

I think that your thread sank for the same reasons that you can't access the care you need. Psychiatric illnesses and patients are the most marginalized segments of our society. Shameful, really.

:hug:

[Cetacea]

10. And here is a link to a despicable thread in which no one was banned.

http://www.democraticunderground.com/discuss/duboard.php?az=view_all&address=389x4627650

[leftstreet]

11. good grief

I missed that one. Fortunately.

[Cetacea]

13. Thank you. I was beginning to feel like I was "too sensitive".

I don't believe the OP ever posted again after that. And there were some posters who I used to really enjoy reading in on the games.

[leftstreet]

15. It's a frightening subject for most people

I see it as similar to our yester-ancestors who believed epilepsy was caused by demons, or Satan or whatever.

As advanced as we think we are, we really aren't in this area.

[Ladyhawk]

24. I think it's even frightening to those who are liberal.

To those who are frightened, try living it. That's hella scary. :scared: :scared: :scared: :scared:

[cbayer]

12. Yes, a thread that exemplifies the prejudice, fear and lack of understanding

about psychiatric illnesses and those who suffer from them. I get your point, but I am posting as a member and strong advocate of psychiatric patients. Please allow me that.

[Cetacea]

14. I am sorry. I didn't mean to imply otherwise.

Thank you for your concern!

[Ladyhawk]

19. I have a feeling I'd better not have a look at that link.

:( :( :( :( :( :( :( :( :(

[Ladyhawk]

25. Thanks for the hug.

:hug:

[Wickerman]

6. I'm sorry. I didn't see the thread, but now with the link to it

I don't know what I could've offered. The org I work for struggles to find psychiatrists. There is a nationwide shortage of them. NPR did a piece, brief as I recall, on the shortage just a week or two ago that rang very true. The problem is worsening rather than improving. Wait times for new patients are laughable. Crisis care is a dream.

That they (California) won't let you go out of County is really unfortunate. Purely administrative and bureaucratic in foundation, I'm sure. Practical from an administrative perspective, unfair in a service provision world.

Best,

Wickerman

[Ladyhawk]

23. I'd like to change the rule for Medi-Cal recipients.

We should be allowed to seek psychiatric care outside our county of residence.

Obviously, many of us are sick, so we have trouble advocating for ourselves. If I could get someone with the energy to raise a stink, it would be a start.

Contacting my neocon representative is an obvious dead end. Barbara Boxer would probably refer me back to him.

[pipi_k]

7. What else bites

is that even if people with psych illnesses aren't marginalized, we're quite often shamed and misunderstood.

Mr Pip thinks I shouldn't lie about, or try to hide the fact that I have panic disorder and agoraphobia (along with a few other things) because my inability to do some things or go some places will be misunderstood by people. Doesn't matter in the long run, because sometimes I tell people and they STILL don't understand. They think it's something you just "get over". Especially when they see some stupid show on TV where someone is magically "cured" in 12 sessions or less (which gets boiled down to a 30 or 60 minute show).

Or they "know someone who couldn't leave the house for 15 years" and someone in the family "made" the person go out for one reason or another, and POOF...the problem is GONE!

Yeah...OK. Whatever. I wish it could all be that easy.


Anyway, I'm sorry you're having such trouble getting the help you want and need. You're definitely not alone...

:hug:

[Ladyhawk]

27. I've stopped telling people.

Still, they often get the sense that something is "wrong" with me. I have trouble hiding my symptoms when I'm ill.

My private voice teacher pulled that "just get over it" crap on me. I no longer have a private voice teacher.

The weird thing is, I was physically ill and she got pissed at me for missing lessons. I have a lot of health issues like diabetes, fibromyalgia, sleep apnea, degenerative disc disease. I don't talk about the psychiatric illnesses much. She didn't know anything about them, so I was kind of surprised to get blindsided by the "just get over it" angle.

I've even received that "advice" from licensed psychologists and psychiatrists, who should know better. I am no longer amused. I just quietly disengage myself from people who treat me that way. I know I'm doing all I can. Those smug assholes can take a flying fuck at a donut as far as I'm concerned.

[GreenPartyVoter]

8. I missed the psychiactric link. I'm on MaineCare myself and see

a doc at the nearest County place. Or rather, I see the psych nurse regularly and check in with the doc every few months.

[EFerrari]

9. kick

[Cetacea]

16. We are in a very hot news cycle right now.

Though your concerns are certainly valid.

[Dappleganger]

17. Did you try healthboards.com?

That's a shame, really. I see a therapist every two weeks and don't know what I'd do without her.

[BlooInBloo]

20. Just because.

[TBF]

22. Perhaps people don't know what to say? I doubt many on DU would

stigmatize someone for having a mental illness, but we often respond when we can relate & offer help. I wouldn't know how to go about getting help in California (or here in Texas for that matter) but I'm sending positive vibes your way and hoping someone will respond with something helpful.

Happy to kick this thread - the topic is important.



:kick:

[Maru Kitteh]

28. I think it's most likely that more people knew how to provide useful information about the fibroid

Fibroids are relatively straightforward ailments. If I get a cut on my finger, I put a band-aid on it. I know what to do. If I've had fibroids, there's a damn good chance they resemble your fibroids too, therefore, I can tell you how my doctor and I treated them or how I manage them.

Psychiatric care is a vague term, and even if we've dealt with similar ailments, our lives and needs and psyches are very different. It's harder for me to say something helpful to you, especially concerning a provider. At least with the fibroid, you can work with your general practitioner for a while and I can maybe come up with some helpful suggestions or questions. Sometimes you can do the same for psychiatric care, depending on your practitioner, but that seems less common, and it's harder for me to come up with helpful questions and suggestions.


That little bit aside, I'm studying now to gain a dual track Family Nurse Practitioner/Psychiatric Mental Health Advanced Practice Nursing degree so that I can be flexible and hopefully address the under-served needs of my own community. I'm really sorry you're having a hard time getting all of the healthcare you need. It sucks to the absolute Nth degree and the problem just keeps getting bigger. Talk to as many nurses as you can, the increased contact they have with other patients in your situation is invaluable, and they want to help you.

Please keep us updated. :hug:

[BirminghamExaminer]

29. I never saw it and if I did I probably wouldn't respond because...

I have no information to pass on about this issue. I don't know anything about California and feel helpless to offer any suggestions.

But having had a fibroid tumor is something I know about so I responded.

It's not that I don't care. I honestly don't know what I could possibly say that would help or add to the discussion. It's certainly not because of stigma or disinterest.

[Odin2005]

32. A lot of ignorant people think that if the illness isn't physical it doesn't exist.

People with Clinical Depression are told that they just need to "cheer up". Older people go on rants that "ADD doesn't exist, they are just spoiled kids that just need to be beat into obedience". Us high-functioning Autistics are called anti-social and are accused of "making up excuses for being lazy" if we try to explain our sensory issues.

Ultimately, IMO, this crap comes from the 2 related notions of "free will" and "immaterial souls". These two notions lead people to ignore basic facts about the workings of the human brain/mind.

[Ladyhawk]

35. Exactly. "Mental" illness IS physical.

Dualism is responsible for the stigma. Yet another bad thing to come from the Christian religion. I'm with Thomas Jefferson: "Christianity is the most perverted system ever shown to man." I wonder how he'd feel about Islam?

[Fire_Medic_Dave]

37. I posted a thread that had over 91 recs and now is hard to find. Nature of the beast.

Try the health forum.

David

[illuminaughty]

38. Ladyhawk, I think I know why your post sank

I went back and looked at the time on your OP. It was almost 3am. I've been here for years but didn't post much until this past six months. But, I'm a night owl and there's only a few of us on at this time.

I've had threads sink so quickly at that hour it was like they never existed.
I've responded to posters with very supportive comments while throwing in my own personal circumstances that were similar. And heard no reply. Not because they were jerks. It's that they just didn't see it. After 48 hrs. you can't really see who's replied to your post.
So, I now post at this hour assuming it will be lost in the shuffle. But this is when I'm up and can be online.

As to your problem, I really feel for you. I don't know what I'd do if my GP wasn't a freakin' saint. Seriously. Several of my Friends see him and when he sends us to specialists we all go running back to our Doc because he is so wonderful and REALLY listens.

I have MS and my depression has been overwhelming over the last six months. We keep switching meds to see what will work and I've had luck recently with Prestiq. He gives me free samples to help the cost. For the chronic fatigue, they now have me on Adderoll. I was on Provigil for some time but it is frighteningly expensive now (almost $400 for 30 tabs), so I take the Adderoll.

I know my cousin in L.A. has a hell of a time with her psych. treatment. Don't know why people can't figure out that this is a life and death subject. That people turn to desperate measures that become tomorrow's headline. And, in today's climate, this needs to be addressed immediately. We cannot just "get over it" anymore than we can tell ourselves to not have cancer.

I too have sat and typed out something personal I thought I wanted to share on here, only to decide against it. Too many people in attack mode on here recently. I have found some good info sharing by just googling various conditions and meds and have found some nice sites where people are really helpful. I wish you the best and wish I had more helpful info.

[WV_Biker]

39. Your not alone....

...and I'm sorry I can't give you any better advice than that. I suffer from depression / bipolar disorder. I suffered for years and have recently found some treatment. I hope you are able to find your answer. Just remember you are not alone in this...there are many of us out there. Above all don't worry what other people think.



Jeff

[Vinca]

40. Maybe because we don't have the answers.

Maybe because many of us are stuck in our own, private, medical hell holes with no solutions until some form of government-sponsored healthcare happens. Don't take it so personally.