Mental health linkspam

[liv]

There are two things you should know about this post: I'm writing it as a non-mentally-ill person about issues that don't affect me directly, so please feel free to take with as much salt as you like, or ignore it if you hate that kind of thing. I'm mostly planning to link to the words of people who do have mental illnesses, but I'm bad at writing linkspams without my own commentary. And secondly, it concerns mental illness and some of the worst consequences of that, so it will mention triggering topics including self-harm, suicide, forced treatment and medical neglect / abuse.

So there's been this cute #timetotalk campaign recently, backed by the government and mental health charities. They set February the 5th as a special day for talking openly about mental illness, hoping to combat stigma, and they produced a lot of glossy media and social media stuff encouraging people to have a chat with their friends who are dealing with mental illness and not be afraid to broach the topic.

I've seen many things, both on Twitter and in long-form, pointing out the flaws in this, so I'd like to link to some of the response pieces. The basic idea among many mental health campaigners questions how much good having a friendly chat is going to do? There's all this resource going into this high-profile campaign, and a huge glaring void in funding for actual services run by people with the expertise to actually help people with what can be serious, even life-threatening illnesses.

When siderea posted this thinky piece about the stigma of mental illness, I somewhat disagreed with it. But the #timetotalk thing is making me revise my rejection of her points. (Even though she's focusing primarily on the US context, a lot of what she says seems applicable here.) It does seem like really clearly the case that:

People with mental illness overwhelmingly seek out mental health care. They are prevented from getting it not by any reticence on their part, but because there isn't enough to go around

At this point there's basically no meaningful NHS based support for anything short of a life-threatening emergency and resources are inadequate even to help people who are in immediate crises and a danger to themselves. And charities and third sector services have suffered extremely damaging cuts. So it's a bit worrying, a bit anti-political perhaps, that we're getting all this rhetoric about how we should make time to chat to our friends about their mental illnesses, but there's absolutely no expert help available for them.

I mean, I've seen my friends, who themselves have serious mental health problems, desperately trying to keep a housemate alive through a huge crisis including multiple, serious suicide attempts. And they're both people with a lot of social capital who know the system well and no matter what contacts they used, what strings they pulled, there was no meaningful help available because the housemate's case wasn't emergency enough. It got to the point where the police ended up being about the most helpful resource available, and really, jailing someone is a very poor last resort to prevent them harming themselves.

Short of that extreme, I know really a lot of people who have spent months or years desperately trying to access any kind of support beyond the prescription of psychoactive drugs (for which the evidence is really poor for sole efficacy not backed up by other forms of therapy). I know at least some people who have refused what threadbare, inadequate help is on offer not because they're afraid of the stigma of being thought "crazy", but because the support available has involved misgendering, cultural insensitivity if not outright racism, and in the worst cases violence. And I'm pretty certain the people most excluded by mental health provision are not known to me, they're the people who are not highly educated and articulate with access to social if not financial resources and a very strong ability to self-advocate.

The other reason the #timetotalk thing is anti-political is because it kind of translated into an official coming out day thing. I have a lot of admiration for people who were able to post on FB or their blogs explaining their mental illnesses. And I am aware of a lot of people with mental illnesses, especially older people, who are extremely grateful to celebrities like Stephen Fry coming out and generally making it more acceptable to talk about mental illnesses than was the case historically. But I am uneasy about putting the burden on the people who actually have mental health issues to deal with stigma and prejudice, it becomes yet another disability tax. And I am extremely unhappy about anything that looks like pressure to come out, there are lots of very good safety reasons (as well as economic and privacy and comfort ones) not to tell the whole internet about your craziness.

I definitely do want to signal-boost rmc28's Time to talk post. She has a really good point about exercise and mental health. Sometimes the stigma isn't against mental illness as such, it's against people doing exercise when they don't have the right body type, or aren't athletically competitive. And of course there are all the issues of access to exercise. And the extremely justified worry that some mentally ill people have that they'll just be fobbed off being told to go for nice restorative walk, which is just an excuse for rationing provision of meaningful medical care, while again, exercise has very poor evidence of efficacy on its own without therapy and / or drugs. The comments discussion on rmc28's post also points out that some people have physical disabilities and illnesses as well as mental illnesses, and assuming that everybody can safely exercise is also disablist.

As an aside, I broadly agree about the This Girl Can campaign also discussed in the post and comments: it's somewhat comforting to have a body positivity campaign that includes people with figures and faces like mine, not just ridiculously beautiful, always white, airbrushed "plus-size" models. But as with #timetotalk it really ignores systematic issues beyond just stigma against women exercising.

I also think everybody should read Holly Matthies' LibDem Voice article about immigration and mental health. The immigration system we currently have here is abusive and traumatizing, and serious commitment to improving mental health nationally would include fixing that, as well as funding mental health services adequately. Not just having happy fun conversations about mental health.

The other major political factor which is bad for mental health is the way that the benefits system is becoming punitive. Living in terror of arbitrary sanctions meaning you can't afford to eat properly (this is an old article, but there's pretty clear evidence that deliberate, politically directed starving of people who don't comply with the system is only getting worse) and risk losing your housing is not good for anybody's mental health. And using benefit reductions as blackmail to force people to accept unsuitable treatments is utterly barbaric.

So yes, combatting stigma against mental illness is a good idea. It's also entirely, terrifyingly inadequate when there is so little help available for people who need it, and when the immigration and benefits system are abusing people who have the misfortune to need support.

Comments

[davidgillon]

Good post, absolutely nothing I could even quibble with, and you even mentioned the Where's The Benefit piece on forced treatment I was thinking I must bring up. WRT sanctioning and harm, a senior DWP executive admitted in front of the Work and Pensions Select Committee last month that they expect all sanctions to harm the claimant's health, which makes the targeted sanctioning of people with mental health issues even more appalling.

There's a really good piece on this by Frances Ryan in yesterday's Guardian: How many benefits claimants have to kill themselves before something is done?

[liv]

Wow, thank you, an endorsement from you really means a lot, given how involved you are in disability activism and how much I admire your writing. I'm really glad you didn't spot any screw-ups here. And I like WTB a lot, I could easily make a long list of relevant posts there, but the forced treatment one seemed most on point for this.

[davidgillon]

From the other side of things I was delighted to see that someone I don't strongly associate with disability activism (though I continue to be amazed at all the subjects you do write about) is reading WTB!

how much I admire your writing.

{blushes}

[liv]

The thing is, I'm not a disability activist, cos I'm not really any kind of activist. But I care about disability activism, it's a long-standing interest of mine.

When I was a teenager I was friends with a woman much older than me who was into disability stuff, and was married to a dis studies academic (this is back in the mid 90s where that was a fairly new or unusual thing in mainstream academia).

And then my brother had a disabling injury in 2002, so it became very personal as well as generally interesting. And he's very much the ideal posterchild disabled guy, young white male, tetraplegic following a spinal cord injury, which is the kind of thing that even the most ignorant and prejudiced people recognize as a "real", permanent disability, and it's not variable or painful and it doesn't really prevent him from participating in life and work as long as fairly simple adaptations are provided, the sort of absolute baseline of wheelchair ramps. And even with all those advantages there are so many obvious ways that the current political climate and people's prejudiced attitudes make things worse for him.

The ways this government has actively attacked, not just failed to provide support for, disabled people really scares and angers me. I have never been political, I've never been a protesting or agitating sort of person. And with this and the immigration stuff, I'm getting closer and closer to the point where I feel morally obliged to do something, even though it doesn't come naturally to me. So yes, I'm definitely following political dis blogs including WTB. Thank you for the work you do, it's really important and not nearly enough appreciated.

[rmc28]

Thank you for linking to my post; what I didn't include is that I have got to the point of using exercise/lifestyle management after a couple of rounds of counselling. In both cases I went to the counselling service provided by my employer, and I didn't even bother trying for help via the NHS.

I think my feeling about "reducing stigma" is: necessary, but not sufficient.

Stigma was a problem for me: I found it very hard to seek help when I was clearly badly in need of it after N was born, and I only did so when the post-natal depression screening questionnaire put me in the position of lying to the health visitor or admitting I had a problem. (And she was very good at non-judgementally questioning me further, and checking up on me to make sure I was actually doing the things I'd said I would to tackle my problem.)

I found it fairly scary to state both publicly on my blog, and at my workplace, that I had post-natal depression when inviting sponsorship for MIND last year. (And after that, a few people struck up quiet conversations with me along the lines of they, or someone close to them, was suffering from poor mental health, and how they'd appreciated me mentioning it.)

So in an ideal world, things like #timetotalk would exist alongside good provision of therapies and drug treatments; but I'm not sure that #timetotalk shouldn't exist because the provision is poor. In the long run, the collection of personal stories may make it easier to argue for better provision with those who can fund it.

[liv]

Thank you, this an excellent addition to the discussion. I think I was too negative about measures to reduce stigma; I do think it's a good thing, I'm just upset by how far it falls short of the sort of wide-ranging changes that are needed. I'm not really suggesting that #timetotalk shouldn't exist!

I am happy to hear that you were able to get some counselling privately, and sorry that stigma made it hard for you to seek that help in the first place. I can only imagine it was scary telling people directly about your stuff when you were fundraising, and it seems extremely likely to me that you did good by coming out like that. I just get very suspicious of social pressure on people to disclose stigmatized things; if a particular person chooses to do so, all kudos to them, but I do feel there should be more room for people who've weighed up the risks and benefits and chosen against it.

[rmc28]

I was absolutely conscious that I was both in a good position to disclose (a very secure employment contract and good working relationships with my immediate bosses) and also a "good" example of someone with mental illness, as I'd managed to keep it from noticeably affecting my work. So the fear was very much about the stigma of being "mad", not of the likelihood of any actual harm coming to me from it.

But there is definitely a difference between being in a privileged position and choosing to disclose, and feeling pressure to disclose when not privileged or safe, or even being outed by others "because we should all Talk About It".

(frozen) (no subject)

[davidgillon]

This reminded me that there was a point I wanted to raise about #timetotalk and attitudes to disability in general. I'm actually fairly concerned about the idea behind #timetotalk because I think it ties into a problematical attitude towards disability and potentially reinforces negative behaviour.

I do see what the mental health charities are trying to do, given the stigma around talking about mental health issues. However for disability as a whole there's the wider problem where people seem to regard the most intimate details of your disability as a matter of legitimate interest, if not their entitlement, with absolute strangers feeling entitled to demand anything from 'So what did you do to yourself?' to 'So, can you still have sex?'. My thinking on this is that it's a form of infantilisation, a variation on 'So what did you do at nursery today, little Johnny?', an instinctual reduction of disabled people to less than adults, and I'm worried that #timetotalk may inadvertently reinforce that behaviour.

(frozen) (no subject)

[liv]

Yes, I think that's a really good thing to notice, thank you! I have been focusing on the potential harm from disclosing, but I think you're right, there's also an expectation of making disabled people be an unlimited teaching resource to satisfy non-disabled people's curiosity and white knight impulses. You may be right about the infantilizing aspect of it, and I think there's also a kind of, privileged people wanting to feel good about themselves without actually putting in any work, so they make the people they're supposed to be helping do the actual effort, including the emotional effort of making their so-called "allies" feel worthy. That's not a dynamic to be encouraged, definitely.

(frozen) (no subject)

[(Anonymous)]

My thinking on this is that it's a form of infantilisation, a variation on 'So what did you do at nursery today, little Johnny?'

Really? It seems more like curiosity about the unusual to me.

When presented with something out of the ordinary (and disabled people are outside most people's range of experience) the natural human reaction is to ask questions, and sometimes this over-rides people's politeness and leads to them asking inappropriate things. Especially about sex as that seems, sadly, to be where people's minds hastily jump ('the attraction Newton forgot' and all that).

I suspect you'd observe the same behaviour if somebody met, say, someone with a wildly unusual job (eg one could imagine someone meeting a movie star blurting out, 'So, for the sex scenes with those actresses, are you really, you know, doing it?').

(frozen) (no subject)

[rmc28]

Yes, the assumption that people are *entitled* to know "what's wrong with you then?" is awful.

[cjwatson]

I really haven't been following #timetotalk, but your description of it reminds me somewhat of the Big Society notion: sounds lovely but actually seems to translate into cutting central funds and expecting people to rely on local ad-hoc support networks that may or may not exist.

[cjwatson]

And, to clarify, I mean the government pushing it with one hand while eviscerating the NHS with the other. I can totally see how it's a useful thing in itself.

[liv]

Yes, that's a good connection, I hadn't thought of the similarity there. I'm a big fan of ad-hoc support networks, but they can't replace core services which require experts to run and deliver them. And pretending they can is putting a shiny sticker over the damaging austerity agenda.

[lilacsigil]

And from the pharmacological side, I get a bit sick of people (in this case the founder of the Cochrane Report) coming around to say anti-depressants are ineffective and/or not as good as therapy in many cases. Well, no shit. But the huge barriers put in place to getting therapy from a psychologist, let alone a psychiatrist, mean that most of us struggle through with the drugs because that's all we can get and they often work better than nothing in a crisis at least.

We had a similar R U OK? day here and all the same questions came up, while the government pulled money out of mental health services, including prisoner counselling and medical services. If UR NOT OK, then what?

[liv]

Yeah, I'm by no means anti medication! Yes, these drugs have side-effects and they may be addictive, and they're mixed in effectiveness. But they might well still be better than untreated illness, and as you say they might be all that's available. Boo to purely cosmetic positivity campaigns while the actual expert services are defunded, though.

[lavendersparkle]

I potential positive of reducing stigma is that eventually it might lead to the political pressure to provide adequate services. There are lots of reasons that cancer treatment gets disproportionate funding, but one of them is that most forms of cancer have been thoroughly destigmatised. This makes people aware of how common cancer is and be willing to believe that it might affect them and their loved ones, rather than believe that it's something that only happens to other people. That in turn leads to political pressure to put resources into treating it.

[liv]

Yes, you're absolutely right, destigmatizing cancer has done a lot in terms of making the disease a political and funding priority. So maybe this campaign will backfire in some sense, instead of distracting people's attention from the crisis of mental health funding and resource, it'll make people get political about mental health because more folk will realize that people they care about are affected. I hope so, anyway!

[azurelunatic]

It's not just a risk of stigma in talking about things with an inappropriately nosy nonprofessional, it's a risk of re-injury, possible collapse of coping mechanisms, and destroying relationships.

I don't have links to back this up, but from my own experience and comments from others, it seems like the middle of a mental health treatment is one of the more vulnerable moments. It's not just that it's variously hard to find appropriate treatment, but that starting the conversation can disturb precariously-balanced coping mechanisms, and that starting any kind of treatment where there isn't an expectation of seeing it securely through for as long as it takes to reach functional is really really scary. If somebody is barely holding on to start with, doesn't have enough hours in the day, barely manages to adequately meet their obligations, and then during treatment they get worse before they get better ... what happens to the balls they drop during treatment? What if they can't afford to continue treatments, or lose access to the care, and they wind up worse off and trying to get back to baseline on their own?

I have had enough effective treatment that I'm okay to talk about what's going on in my head in many circumstances, and I know how to protect myself if a conversation about that manages to dig up something unexploded. I don't always know how to protect the person I'm talking to from a defensive reaction if they continue badgering me once I've said that I can't talk about this, especially in person if there's nowhere for me to get away. Screaming "STOP!" and covering their ears is not something you'd expect someone over the age of 25 to do necessarily.

[liv]

Yes, really excellent point. Untrained people might well actively do harm, not only fail to do anything useful. And that's a really vital observation about the middle of treatment being a particularly vulnerable stage. I'm really sorry to hear you have personal experience of people continuing to push on painful topics after you've set a boundary :-(

[azurelunatic]

Twenty years ago in Alaska, crisis lines and knowledge of crisis lines were a lot more rare. Every now and then when a friend asked me how I was doing, I would either explode in tears or ask them very carefully whether they were able to talk for a while. I knew I was not doing too great, and if I allowed myself to look at those feelings for any length of time, I would not be okay in the slightest. If I had someone to talk with, about anything (even the weather) while I was melting down, I felt I would be okay and able to get through it without coming to any harm. I also knew I ought not to be left alone at a time like that. Starting a "hey, how are you actually doing?" conversation with me, and then ditching out in the middle, would have been worse than not having that conversation at all.

[ayebydan]

I can't argue with any of this at all. I think you understand the situation very well for someone not personally living with a mental illness. I don't think #timetotalk is a bad idea. We DO need to talk more openly about these things but such campaigns can be run very cheaply through social media. You could literally have 3 or four people sitting on social networks and it would get picked up by the general public and private mental health blogs and take off. The problem I have is the money put into it when everything else is so underfunded. Talking does help. Sometimes just getting things out helps and of course therapy is mostly talking but it need a professional to ask the right things the right way in a certain environment and I worry ignorent peolpe will pick up that if someone just says what is wrong then they will be ok.

Another issue I had with the campaign you picked up on I think. I felt pressured to talk. Everyone I knew was rambling away on twitter and saying everyone else should too, ie me. I didn't want to talk about it that day. I have a blog dedicated to that sort of thing and I journal about it. I didn't want to feel pressure. I felt like some sort of performing monkey that was being glowered at for refusing to juggle. It all came from the best of intentions but I think it fell a bit flat in the end.

[forthwritten]

This is a really excellent post - I tweeted a few criticisms of Time To Talk and meant to develop them into a post, but I think you've said anything I wanted to say!

One of the other really problematic things with this is that a five minute chat probably doesn't actually do much - and certainly doesn't replace good medical treatment, psychological support and strong, knowledgeable, capable support networks. I wonder if these chats are actually for the mentally okay person's benefit so they can feel good about themselves. Is a five minute chat going to help me though? Probably not, and on a bad day someone's well-intentioned "well, I'm sure things will be better tomorrow" will actually make me feel worse because it's been an entire adulthood of waiting for that tomorrow.

I also think that the pressure to talk without adequate employment protection is really problematic. I'm applying for jobs at the moment, and being open about my mental health issues could jeopardise that. The onus should not be on me to hold out my experiences for someone else's curiosity.

[azurelunatic]

Oh god yes. I remember calling around to my friends and making sure they had enough time to chat, because the rejection of having someone say "Well gotta go!" five minutes in (even if we weren't talking about Heavy Stuff) would have been too much for me and leave me worse off.

[slashmarks]

A lot of people's experiences of mental health care consist mostly of violence, because a lot of things that are routine in health care are pretty inherently violent and abusive.

I think that it's important to try to counteract ableism against mentally ill people, but the best lense to do that isn't through a 'don't be afraid to seek treatment' model because, truthfully, a lot of people *should* be afraid to seek treatment. At least in the health care system I'm around, treatment is relatively safe for people with depression or anxiety that responds easily to medication and CBT, and really no one else. (I can talk more about that if you want, but you may have heard it before.)

In the US, people who can afford to shop for a private practice therapist they get along with often have a very different experience from people who have to see public hospital affiliated therapists as well, though I'm not sure how that distinction would translate to other places/if it does.