Good Sunday to you, good people.
[pointless introductory paragraph redacted due to pointlessness of pointless introductory paragraph]
Ready for TWIM? Yes? All systems go, then…
This edition doesn’t have that many triggers, but do be aware of general discussion relating to weight, religion and psychiatric balls-ups, as well as more in-depth discussion regarding death and online bullying. Also be aware that the blogs/articles linked herein may contain deeper triggers (especially true with the penultimate one).
Paul from It’s Just a Ride, who volunteers for Rethink, is concerned about that said charity’s service users (and other mental health patients) are missing out by not having easy access to the internet. But is the camaraderie of the internet really as good as us lot here in our lovely Madosphere world evangelise it as?
…In the last Newsletter [that of his Rethink branch] I have just helped with pretty much every article had a link at the bottom to refer the reader to more information online.
This is all well and good but the sad fact of the matter is that whilst out meeting people at the User Forums, 75% of the people at the forums DON’T have a computer or Smartphone to access the internet. We have provided places where it is possible to get cheap well maintained computers for really knock down prices and that is all great and laudable, but then after this past weekend a reality hit me and I had to take stock at how I go forward in my future dealings with people who have any kind of health issue be that Mental Health or Physical Health or even for the fully well.
Can I in all good feeling and with a hand on my heart say to someone: Get online and things in your life will improve no end!
Can I really say to the lady who has Bipolar who struggles to keep a conversation going in a room of 4 people to get online and meet more people like you and find out you’re not alone. When in truth she could say the wrong thing on Twitter or Facebook and BAM she opens up a shit storm of abuse aimed at her for being in the wrong place at the wrong time.
Can I really say to the bloke who has Schizophrenia who is having a bad patch, but is trying to keep himself safe by listening to music on YouTube and making the odd comment, but he phrases something wrong and in the ensuing days gets bombarded with a torrent of abuse for having an opinion that is aimed at him for something he said whilst being unwell and not completely in control of his own judgement.
There is far too much resemblance on the internet of the Wild West. The only thing missing is Marshall Dillon and Billy the Kid shooting it out at the OK Corral, yet given time it wouldn’t surprise me that that wouldn’t show up on YouTube.
So here is my question: How do we start to make it safer for people to be introduced to the online world when we as experienced users are still vulnerable to attacks?
Given the crap levied about on social media over the last few weeks – and on occasions prior to that, too – this is a very fair question. Truly, as Paul acknowledges, the internet is a great conduit for people dealing with a mental illness to interact with others and obtain information and support, but it has a dark side too. What is the way forward?
Paul mentions his recovery in the above post, though he does so generally. More specifically, opinion on both the term ‘recovery’ and on its application – that of the recovery model, in the main – is deeply polarised. Werehorse, over at The Path With Heart, rejects and dislikes the word.
I have been trying to work out for a while why I despise the word “recovery”. Much of my reaction to it is the way mental health professionals use it. All the recovery models I have encountered have been dumbed down and condescending. My local pyschiatric ward used to hand out a Recovery Pack to everyone admitted and I’ve never read such a patronising load of shit in my life. Other stories, told from different perspectives, seem to imply that you can just walk away from psychiatry, stop taking medication and live happily ever after. I did it, so you can too! This worked for me, so it will work for you! (if you only believe/try harder?) (And yes, I am being biased and unfair and simplifying the reality. I freely admit I do that too.)
The concept of recovery implies to me that there is something to be recovered from, that you are somehow damaged and need to heal. I assert that I am fine exactly as I am, with this-thing-I-have-that-I-currently-choose-to-call-illness and all. Besides which I don’t experience my life as a journey, as a process of personal growth. For me it is more cyclical. I have, after all, “recovered” over and over again.
I’ll admit to having employed this term on a casual basis myself, as my mental health started to improve after my hardcore breakdown in 2008. I’ve used it, erroneously, as a synonym for ‘stability’, which is really quite a different thing. ‘Stability’ acknowledges that the thing exists, but is presently manageable (with the right treatment and support, rather than in some magical solipsistic way). Although the recovery model does to some extent advocate living with the thing to opposed to being cured of the thing, which is a laudable enough position, it sadly (in my view anyway) does so in a patronising, even sometimes dangerous fashion. As such, I feel that Werehorse is pretty much on the money here.
In a post that will have resonance with many of us, Seaneen from The Secret Life of a Manic Depressive examines her fear – or phobia? – of death.
The doctors call it panic disorder. I’m trying to medicate away an existential crisis.
It’s not working.
I’ve always known, but never believed [that death was inevitable]. It seemed so far off and distant, surreal and unformed. It doesn’t feel that way anymore. Now I know it and I believe it. It’s going to happen. When I am lying in bed desperately trying to sleep and I feel my veins jumping beneath my skin, my heart-mouth almost chokes me with the terror that I’m going to stroke out- it’s happening, now, now, now, it’s happening. And I also know that it’s my own terror causing this, that my heart is beating so rapidly my veins can’t keep up, and the weight on my chest is another panic attack coming to smother another hour out of my finite hours. I know this, and yet it doesn’t help. It’s the same way I know that my fear of dying won’t stop it happening (it will hasten it), but I can’t help it. Once you know, really know, you can’t unknow. Once you believe, you can’t unbelieve. What should be freeing traps you. Every single twinge feels like a mortal threat. And the medication I’m taking to cope with this reality is making me feel sick and tired.
I’ve had a big year; done those, “once in a lifetime” things, like getting married, having a hen night, those milestones in life that are supposed to mean so much. I’ve had a difficult couple of months. Some people close to me wonder if I have PTSD. Maybe. It has certainly gotten worse since those events. The realisation that I can’t go back. That things are what they are. What has happened to me has happened forever. All of it. Pain I have caused others have been done forever, and I can’t undo it. Crying doesn’t resurrect a father. He’s just bones now. When you have a child, you are condemning someone to death. You have a date of birth and on the stone will be the date you died. That will be an event to other people, but not to you. I can’t read about space, or science, because I won’t be there to see any of it pass. How can it be that I can’t change it? Any of it? When egotism and insignificance clash.
There’s really very little that anyone can add to this. It sums up perfectly those existential apertures that we open up when we consider the finality, and reality of death. It’s a morbid train of philosophical thought, but not one easily controllable, as Seaneen has so eloquently detailed.
Eliana, writing at There’s Sharks in the Deep End, is bemused at the idiotic singularities of mental health professionals…
… study the two sentences below:
“You must be drinking a lot as you’ve gained weight and aren’t eating”
then in the same breath:
“You can’t be eating anything, because you’re drinking a lot and you haven’t gained any weight”
Am I the only one to spot that contradiction?
…whilst My Crazy Bipolar Life is wearing an equally WTAF, MH Professional?! expression after meeting her new psychiatrist.
I didn’t like my old psychiatrist much, I admit that, but at least he gave appointments that lasted around an hour not fifteen minutes. He would ask me about the voices, what they were saying, how they made me feel, how they affected me, what I thought they wanted, etc. But this new guy? He didn’t ask a single question. He skimmed over my medications again then said he would agree to leave my Diazepam dose at the current level of 16mg a day for three more months before I have to start withdrawing and leave my Quetiapine at 750mg a day but he then said that he thought I was experiencing low moods and wanted to increase something to help me (Quetiapine is already maxed out) so he asked me if I’d like to move up from 30mg Mirtazapine a day to 45mg a day. I said I’d give it a go.
Then he said something which surprised me a little – he asked if I wanted something for the anxiety that I could take on a longer basis than any benzodiazapine? I asked him what he had in mind and the medication he recommended was Pregabalin. I told him I’d never heard of it before and he simply said just to try it and if I didn’t like it then I didn’t need to take it. This was another thing that annoyed me – the old psychiatrist would have taken five or ten minutes to explain what type of drug it was, what possible side effects there could be and answer any questions I had about it. This new psychiatrist, however, offered no information at all and simply told me to go to my GP next week and get a prescription for it, as well as for the extra dose of mirtazapine.
This kind of imbecility is a justifiable matrix for hating the discipline of psychiatry. I mean, I’m not that way persuaded, as anyone who’s read my stuff before will attest, but with experiences like this, I can certainly understand why people are, or become, weary and cynical. Frankly, this kind of derisive behaviour is insulting and disgraceful – but I fear that it’s replicated across the world all too frequently. My first reaction upon reading the above paragraphs was, “COMPLAINT!!!“, but it turns out MCBL had already written to him:
I thought that by writing him a letter and explaining everything it would be beneficial to both him and me but now it sort of feels like a waste of time. Even though he wrote a short letter back thanking me and saying he understands my mental health better now. I don’t even think he remembered the letter until I mentioned it and even then I saw him flicking through my notes and speedily reading through it. Unfortunately I live in such a rural area that he is the ONLY psychiatrist I can see. I am very thankful that we have the NHS in the UK and receive free healthcare treatment but sometimes it’s extremely frustrating when you have to work with people who you feel no benefit from seeing but you carry on going to the appointments anyway because you know that if you don’t then you just won’t have a CPN/Psychiatrist/CMHT.
Sigh. I can’t argue with that.
Mental health difficulties can be difficult for anyone to talk about, but perhaps this is most notable amongst very religious people. I’m by no means suggesting that all or most people of a faith would believe the following, but you do sometimes hear of the word ‘failing’ or accusations of ‘spiritual crisis’ being used as deflectors for the reality – ie. the presence of a bioneural imbalance/reactive distress/psychological uniqueness/whatever (in other words, as something that generally needs some form of intervening treatment). In this short but fascinating Guardian piece, Huma Qureshi examines Sikhism and mental illness.
Chandu Shah’s son Deepan was diagnosed with obsessive compulsive disorder in 1989 after he finished his degree at the London School of Economics. Shah and his wife have been caring for him ever since. “In our community, mental illness is perceived as a madness, and the worst possible disease. People treat those suffering like lepers. They avoid them and call them names,” he says. “We did not want our son to be spoken of like that.”
For five years, the family kept Deepan’s illness a secret, giving excuses so that they didn’t have to attend family social events without him, or face people asking too many questions. But Shah says he realises now that there is an urgent need to speak openly of mental illness, rather than try to hide it. “In Asian communities, we are afraid to open up because of what others will think and this means people may not be receiving the help they need. Families need to seek help early rather than feel ashamed. Times have changed and we need more understanding, more awareness and more compassion. My son has an illness, but he is still my son and the wonderful, intelligent person he has always been.”
Khunkhuna believes the south Asian cultural emphasis on family can play a positive and valuable role in caring for those with mental health problems, as it did for her (after her diagnosis, she stayed with her parents, grandmother, uncles and aunts) – but only if barriers of communication can be overcome first.
“Our Asian culture is very family-based, and that’s a real strength. But the hardest step is talking about it. At first, my immediate family didn’t tell my extended family about what I was going through, to protect me more than anything else,” she says. “But talking to them about it really helped. It shared the burden, and now all of my family can relate to and understand what I was going through. I feel as if I have moved on from my illness. Everything is out in the open now. There is nothing to hide.”
I’m an atheist who comes from a (fairly) liberal Christian upbringing, and even I withheld my illness from my family and friends for years. I know how hard it was to change that (though I’m very glad I did) even in relatively privileged circumstances, so can only applaud the particular bravery of the Shah family’s openness.
Joe Burgo of After Psychotherapy takes a look at the psychology behind those couples that always seem coiled around each other: the co-dependants.
Sometimes, these fusion-based relationships are asymmetrical — that is, rather than feelingthe same way, the needs of one partner take precedence over those of the other. The apparenlty subservient partner appears to be without needs and is devoted to caring for the spouse. Now we’re in the realm of codependency — one of those buzzbirds people throw around without fully understanding what it means. Here’s how Wikipedia defines it:
a psychological condition or a relationship in which a person is controlled or manipulated by another who is affected with a pathological condition (typically narcissism or drug addiction); and in broader terms, it refers to the dependence on the needs of, or control of, another. It also often involves placing a lower priority on one’s own needs, while being excessively preoccupied with the needs of others. Codependency can occur in any type of relationship, including family, work, friendship, and also romantic, peer or community relationships. Codependency may also be characterized by denial, low self-esteem, excessive compliance, or control patterns. Narcissists are considered to be natural magnets for the codependent.
With its emphasis on manipulation and control (one person the apparent victim of another due to “low self-esteem”), this definition obscures the fact that a codependent relationship actually satisfies the unconscious emotional needs of both parties. For example, codependency may be a shared delusion where we both agree that I am the strong one without significant needs; you are the needy one with all the difficulties but you actually control me. I exist in order to look after you. On an unconscious level, I off-load my needs and vulnerability into you, thus ridding myself of hated aspects of myself; and while you may lack certain emotional capacities or psychological strengths, you annex those very qualities in me and take control of them. Neither one of us is truly needy or separate.
…all of us in committed, long-term relationships must try to find a balance between shared and separate experiences, between our identities as individuals and as halves of a couple. In order to keep our relationships emotionally vital, we need to make sure we have enough “us” time, even when one or both of us may want to do something apart. We also need to make sure we have enough alone time for pursuing separate interests or friendships; if we don’t, the marriage may become stifling or claustrophobic. I’m sure you (like me) have known couples who went too far in either direction. I personally find it a difficult balance to achieve. If I’m not careful, I become too selfishly focused on my writing ambitions or playing piano; if I put those interests aside too extensively for the “common” good, I can easily feel deprived and resentful.
As with all psychoanalysis – and keep in mind I’m a layperson here – I suppose it’s possible to read a lot into something. Nevertheless, Dr Burgo brings up some very interesting theory here, and in all his posts.
Bourach from Conversations With My Head realised today that she’s had a madiversary.
Ten years is a long time. It is more than a quarter of my life. My life vaguely divides up into a quarter living and being destroyed with my parents, a quarter in care and trying to build up an identity after care, a quarter trying to build a life and a quarter being mad. I have been mad so long it has become who I am, my defining feature. That bothers me.
Anniversaries are hard but the anniversary of a decade of madness is impossible. Ten years of waste. Almost 4,000 days of destruction. If someone had been physically ill for a decade people would understand the exhaustion of it. Nobody seems to get the sheer hard work of trying to cope with a decade of madness.
Ain’t that the truth. A mental health difficulty is at least as exhausting as many physical ones, and yes – 10 years is a long time. And it’s bloody hard not to perform self-diagnostics of madness all the time; it is defining, or at least it can be, for many of us. All I know is that, mad or not, Bourach is made of awesomesauce.
Finally, the author of Notes from a Gay Mentalist has a rather happier anniversary:
Well, I must say, when I first started this humble little blog up one year ago today, I wasn’t expecting for it to survive so long as it has done! However, it has, so I should give myself a pat on the back for that. *Pats self on back*
Typing anything personal online has always been difficult for me. There is always a tricky balancing act between how much information we share online, how much we hold back, whether to be anonymous, use a pseudonym or our real names, etc…
Throughout the past year there have been some kind people who have offered encouragement, and some interesting people who I have followed here on WordPress, and on Twitter. I’d like to say thank you to those people for encouraging me to continue at times, when it’s been very difficult to try and do so. In a similar manner, I also hope that some people might have been encouraged or possibly even helped by some of the things i’ve said.
During this past year my mental health has taken a few knocks, this year alone i’ve had 3 or 4 mental health assessments, 1 course of low intensity Cognitive Behavioural Therapy, and have completed 6 sessions of high intensity CBT so far, with more to come. I’m not sure how successful so far they have been, but at the outset of this current period of therapy I told myself that I would try my hardest to do whatever I could to help myself, and, it has to be said that I have done so far, despite my feelings, and worries.
Overall, I think that this past 12 months has been one that has been unsteady and unsettled. But, I have survived so far, and am determined.
I’ve very much enjoyed following your story and interacting with you on Twitter over the past year. Here’s to the next one – happy blogoversary!
Wait, have I forgotten something?
A couple of things, I suppose. Ref: the title of this post. Did you see what I did there? It would take a special kind of nerd (geek?) to simply get the references – and if that’s you then you have literally no idea how much esteem I currently hold you in – but I don’t think it terribly unlikely that some people may have raised their eyebrows about certain parts of the foregoing narrative. Then again, it’s not unknown that I have a propensity to write pretentiously and use bizarre references and metaphors. Whatever the case, honouring a challenge I was set on Friday night, I’ve been (perhaps not so) surreptitiously littering this entry with…um…technical terminology. Can you spot each instance?! The all-pervasive Wikipedia explains, briefly, here.
And our wildcard demonstrates this intriguing linguistic phenomenon in action.
ETA: anyone want to write a TWIM over the next few weeks? I have a few emails to respond to – apologies to those of you waiting on a response – but other offers are also gratefully accepted!