Thursday, August 14, 2014

Appropriate

I've been trying to think about how or whether to write about this Robin Williams stuff, and had mostly decided not to, for a couple of reasons. And then I had this conversation this evening with a friend of mine whose mother has dealt with a whole lot of mental and physical health issues, and still does.
Friend: I have a question about online appropriateness.
You're very appropriate.
May I ask you?
bzzzzgrrrl: Sure!
Friend: So... with this whole Robin Williams thing... people are all like "Oh, suicide and depression and other mental health things!" and now "Oh Parkinson's"!
bzzzzgrrrl: Right
Friend: But... I haven't seen anything that's like... hey... Parkinson's can be caused by the use of psychiatric meds.
Or... treating long term mental health disorders is a really shitty road in this country and the way we do it often puts people in a situation where they end up with mental AND physical health issues as a result of their treatment.
And... clearly... I have a personal stake in that right now.
bzzzzgrrrl: Right
Friend: And I'm mad that nobody is making those connections.
bzzzzgrrrl: I mean, that's presumably because they don't know, because capitalism
Friend: But also, I'm kinda mad that people are getting all up in Robin William's business and making assumptions in the first place.
Right.
I know.
bzzzzgrrrl: Right
Friend: So... I kinda want to bring a little awareness, but also not be an assuming gawker.
bzzzzgrrrl: In your shoes, I might literally copy and paste a bunch of this conversation and share it on Facebook
Friend: Heh.
bzzzzgrrrl: Or also, in my shoes, I might ask permission to do the same and share it on my blog and then let you share the link.
Friend: You certainly have my permission to do that.
Here's the link that I think is helpful that I kinda want to share.
http://www.parkinsons.org.uk/sites/default/files/publications/download/english/fs38_druginducedparkinsonism.pdf
Mom's had a crap ton of the drugs on the list in that link.
And she's almost certainly gonna land a diagnosis of secondary Parkinson's next week.
Which, frankly, we're hoping for because it would open up a lot of doors for services that you just can't get covered for mental health issues.
If you keep me anonymous in your blog, you can post any of this that you want.
FYI
It's just so infuriating to see people on my FB be like "Wow! I can't believe he had Parkinson's too!"
Like it's a damn coincidence.
I mean... maybe it is.
But.
The terrible side effects of those drugs just get swept under the carpet all the damn time.
So, yeah. I'm still not sure I have anything to say about Robin Williams. But I'm glad to give a platform to someone who does have something to say about something related to Robin Williams.

Feel free to make the comments a free-for-all for helpful information. Emphasis on helpful.

5 comments:

bzh said...

People with a diagnosis of rheumatoid arthritis often go on NSAID drugs that give them back some of their mobility and relieve a lot of their pain. The tradeoff: They risk liver damage, which can be a terrible consequence and might, eventually, cause their death. So, a shorter, less painful life in exchange for a longer more painful life is the trade they make.

That's the thing about medicine. There are often tradeoffs that aren't awesome. Just ask any cancer patient who's had chemotherapy. Chemo brain is terrible, as are all of the other effects you trade for continued existence on this planet.

My hope for everyone struggling to understand all of this -- especially as it relates to Robin Williams -- is that nothing they say will cause anyone suffering from depression to be afraid to seek treatment simply because of what else treatment might bring with it.

I've been in the grip of depression my whole life. I know it means to be without the drugs that save my life every day. If that means that my life will be shortened by a consequence of that decision, so be it.

Much white light to your friend and her mom.

bzzzzgrrrl said...

I think bzh's point about people being unafraid of seeking treatment is a really critical one, that I wish I'd emphasized better in the original post.

I think many (not all) medications' tradeoffs are better understood by the general public than psych meds are, but I will be very clear in saying that psych meds can and do save lives, absolutely. They have possibly saved mine. I have made the choice to use them myself and would do it again — but I would do it with a bunch of my own research first, because the doctor who prescribed my meds (who also uses them herself), never, ever discussed any potential tradeoffs, even when asked.

But bzh is correct about all medications, and also about stigma.

If you need help, please find help. And please, please don't let me be the one to discourage you from that.

Anonymous said...

So, I don't usually comment on celebrity deaths because I don't actually know them. While I may be saddened that they will no longer perform, it's not my tragedy. But I have strong feelings about the way I'm seeing Robin Williams talked about today in particular, as news has come out that he was recently diagnosed with Parkinson's. I'm seeing a lot of folks saying approximately "Wow. I can't believe he had depression (or any of the other mental health issues various articles are claiming) and Parkinson's too. That's a lot going on for one person!" but I don't seen anyone making any connections between those two things. I am not making any actual assumptions about Robin Williams because, again, didn't know the guy myself, and I don't mean to put this out there to make it seem like I know what happened to him or anybody else. It just seems to me like, if all of a sudden there's a lovable celebrity reason for everyone to pay attention to this, maybe now is the time for some lesser known things to be pointed out...

Both Parkinsonism and suicide, among a number of other adverse things, can actually be side effects of psychiatric medications. It's becoming pretty common knowledge that we don't have enough resources to go around when it comes to mental health in this country and that some super high percentage of homeless folks are suffering from mental health issues and stuff like that, but nobody really talks about the fact that even people with resources and health insurance and loved ones to support them can end up struggling their whole life with mental health issues and that sometimes the medications can ALSO cause harm. Whether they cause more harm than good depends a great deal on each individual's case, but the negative effects of psychiatric medications can include a whole host of physiological issues as well as things like... suicidal ideation and behavior, depression, anxiety, mania, psychosis and hallucinations.

I'm not saying there's no place in the treatment of mental health issues for psychiatric medication. I know a number of people for whom meds have been a lifesaver. I just don't think the potential side effects of medications get the attention they may deserve in mainstream media. Any good doctor should be discussing these possibilities with their patients and patients should always be monitored for adverse effects. Again, I am not intending here to pass any kind of judgment on anyone's personal health decisions. As with any medications, the possible side effects ought to be weighed against the possible help they can do and decisions are made from there. All I'm trying to bring up here is something that I feel is almost never talked about within a larger topic that is itself not talked about enough (mental health and its treatment as a whole).

It's also worth noting that a lot of research suggests that medication is most effective as part of a multifaceted treatment plan often including talk therapy or even many things not often considered "treatment" such as exercise, yoga, meditation, etc. And I REALLY don't want to further stigmatize seeking help for mental health issues, as not seeking help is much more likely to result in negative consequences than seeking help. I truly TRULY hope that anyone suffering with mental health issues is getting the care and help they need. I just feel pretty strongly that some of this stuff should be out there in the open a little more than I feel like it is.

Calvin Rey said...

Thank you (both bzzzz and friend) for sharing. To the conversation I would add this, especially number 1. "People getting ‘treatment’ in the mental health system die, on average, about 25 years younger than others in the community. http://www.madinamerica.com/2014/08/alternatives-suicide/

Calvin Rey said...

My comment above feels a little abrupt, especially given all of your thoughtful comments. I don't want to be dismissive.

My own 20-year history of being on antidepressants has seen me through several different attitudes: from relief (that what I was experiencing was not my fault because it was an organic disease that could be treated) to skepticism (as my meds didn't provide lasting relief and had terrible side effects and withdrawal symptoms) to outrage (as I read and discovered the drugs are not at all what they are marketed to be). I just got off them altogether--hopefully for good--earlier this year.

I used to repeat what the pharma ads and psychiatrists had told me--that depression was like diabetes and antidepressants like insulin--because I needed to be taken seriously. And more and more, psych meds are the only way our culture cares for people who are distressed. But those early theories about faulty brain chemistry have been disproved, and we still don't know how the drugs work, if they do at all. That's hard to hear when meds are all we've been offered, and after all the pharma industry has done to convince us otherwise.

What distresses me now is that every time there is a big, public "mental health" related event, especially if it's violent, the outcry is for more "mental health treatment." The best our current system can offer is a brief hospital stay and a lifetime prescription for a drug that was tested by the same corporation that developed it. For many, though, the outcomes are much worse. I've been so lucky.

If we want to prevent people from killing themselves, I suggest we try to take better care of each other and work to make the world someplace where they can stand to live. And I really appreciate that this conversation is happening. Thanks to everyone above for their thoughts.