Sleep was a while in arriving last night, I lay wide awake listening to the rain hit the windows, and the sea crashing against the shore. These are sounds I usually associate with the peaceful rhythm of nodding off to sleep, but not last night. Alas my heart pounded in rhythm with the raindrops and my mind was as loud and troubled as the waves.
Calming a poundng heart when you have a mental illness with an ‘anxiety’ element can feel impossible. Often when I have given talks on this very issue I’ve explained it by likening it to watching a scary movie, where the villain leaps out from behind a door and you get that heart stopping shock, and your heart pounds for a few seconds, but unlike the horror film experience, the heart pounding doesn’t simply wear off once the ‘threat’ or the ‘baddie’ has moved on, it stays and can hang around for hours.
It’s really frightening to feel your heart racing for hours, when anxiety leads to a pounding heart, it’s actually a natural body reaction. Your mental state of anxiousness deceives your body into thinking you’re faced with some kind of eminent danger, so your body gets prepared for the “confrontation”: your heart pumps faster and you start to hyperventilate. Your muscles become tighter and you can feel light headed, nauseous, suicidal, and even for people like me, who have managed their illnesses successfully for many years, we can find this type of terrifying attack can take us by surprise, and everything we have learned about managing the symptoms is forgotten as our mind prepares to either ‘fight’ or ‘run’. Since this this primitive response is usually caused by something which upsets us psychologically, then we are rarely faced with the need to engage in a ‘scrap’ or ‘run’ for our lives, but the physical effects are the same as if we were being faced by a hoard of starving bears!
When I’ve been overtaken by an anxiety attack of such intensity I often wish that there had been a hungry bear chasing me down the street, it would make it easier to understand and easier to manage than the terrific emptiness and weariness I am left with today, presented to me in the venomous rhetoric of the BBC and a Panorama programme which should have borne the name of ‘PanoDrama’. Hot on the heels of John Humphrys, and the BBC programme ‘The Future State Of Welfare’ last week, we watched in dismay as Richard Bilton exposed benefit fraudsters as individuals sailing yachts and driving Bentleys, in a programme entitled: ‘Britain On The Fiddle’.
http://www.bbc.co.uk/iplayer/episode/b016lty2/Panorama_Britain_on_the_Fiddle/
What really was disturbing was his apparent belief that people who were claiming an ‘incapacity’ benefit shouldn’t be exercising, working in the garden or indeed doing anything physical because they must be fraudulently claiming. And as for sailing, well that’s obviously a sport of the rich and how dare someone claiming ‘incapacity’ dare to own a yacht! It was nonsensical, sensationalising TV, but the undercurrent of vitriol against those in receipt of benefits was sinister and terrifying. It’s 1980′s ‘Shop Your Neighbour’ telly, it’s lazy and damaging. There was no indication that the presenter or the researchers had considered for one single moment that people with mental illnesses can claim incapacity benefit and are encouraged to participate in sporting activities and hobbies, such as nature and gardening, because it is proven to aid recovery, there was no evidence that they had any intention of accurately reporting balanced factual data at all.
I watched the twitter feed and wasn’t surprised to see the comments around people with ‘blue badges’ who don’t need them, and indeed received a tweet from someone stating exactly that. When I asked him did he not understand that someone with an illness such as multiple sclerosis (for example) may find that their condition fluctuates and did that mean they didn’t ‘deserve’ their blue badge? I was met with comments suggesting people who misuse them were more likely to be the norm!
Even people who claim to be ‘sympathetic’ to the current attacks of the disabled and on people claiming benefits were buying into the ‘surely you want the benefits to go to the most deserving, and these cheats must be outed’ theme which the show was drip feeding. These comments implied activists and campaigners who are concerned about how the Government is mismanaging welfare reform, actually condone benefit fraud and were simply out to attack. Convincing them that nothing could be further from the truth seems a futile exercise – they don’t want to hear it.
A couple of Saturdays ago I attended a rally in London as part of The Hardest Hit campaign, and was dismayed to see that mental illness was not represented there. Despite the fact they’d been plugging the event prior to the day there were no MIND, no RETHINK Mental Illness banners on display along with the others proudly representing their supporters and members. I heard the speeches from the representatives of the disabled community chosen to speak on the day and grew more and more disheartened when no-one spoke up and said anything about people like me, the people whose illness you can’t see, but who are amongst the most vulnerable in society today. A recent report found that suicides and self-harm have increased at an alarming rate in the past 18 months in the South West alone. Poverty, fear, and the aptly named *’ATOSfactor’ most certainly playing a huge part. Why were MIND and RETHINK absent? As someone commented they were happy to be standing at the front of the first protest march, what has changed for their members, and the people using their services over the months? Quite a lot I think! Cuts in service provision, funding and constant attacks by the media.. all the more reason for them to have been there in force, supporting! A press release just doesn’t cut it Charities, you need to place your feet firmly on the ground alongside those who rely upon you.
In less than a week there have been **several negative and stigmatising news articles, and two ‘documentaries’ which have played their aces for the general public ready to add the vulnerable and disabled to their growing list of scapegoats to ‘blame’ for the current financial state of the country.
Since the Hardest Hit rally I’ve felt a growing sense of disappointment at how people with invisible illness are being perceived, and how they will naturally, and not in any way by the intention of other disability groups, slide down the pecking order, and become the most unworthy of the perceived undeserving of disability benefits.
‘Be still my beating heart’ may well be my need and desire, but whilst I watch those around me, people I know, fight to maintain their dignity, and self-worth, I imagine many more nights blighted by terror and an increasing sense of hopelessness.
Dawni 04/11/2011
*Thanx Ray Hancock for your ‘ATOSfactor’ quote.
** http://www.dailymail.co.uk/debate/article-2055716/Breaking-mental-health-taboo.html
Exactly, you have to be in contact with services and have professionals reports for reviews but services are changing to in/out within 6 months maximum and even then, you have to have needs of a certain severity to even get to be able to access them. The sorts of things CPN’s used to do have now have been passed over to Floating Support but they won’t do reports and ASTI services can sneer when asked. Care co-ordinators and GP’s can be unpredictable and then some local charity branches are being expected to cover the shortfall and can even require people to pay for attendance to their groups via a Direct Payment but if the person doesn’t have support to get DLA they won’t even be eligible for a Direct Payment. Many people just give up on fighting for what they need and their lives are deeply impoverished as a result, and these are precisely the individuals who will be targeted for ‘workfare’ and bullied by Job Centres
At the moment the Right seems to be demonising all types of claimants cf the pretence of that work solves everything. Absurd when there are not enough jobs to go round “2.57 million – 17-year high, according to official figures”. That’s a large number of disaffected people so I fear that the state is now seeking to shift the resultant ire to soft and invisible targets hence the worthy/unworthy dichotomy.
There is enough wealth in the UK to provide a decent standard of living for all but the rich will not relinquish their wealth easily and now that continuous growth is being seen to be a fallacy/fantasy, the rich will use every lever available to them to preserve their fortunes. Sad that the BBC is being used in such a flagrant way but I guess that the bottom line is that they just don’t care about us. The only comfort I can draw from the unfolding situation is that we can communicate with each other like never before.
It gets harder to see a future
second comfort to the above: we are by definition resilient…
Another excellent post, well done. Mental health was always at the bottom of the hierarchy, now its getting worse as ‘mentally ill benefit scroungers’ are becoming the go – to group for lazy journos in search of a soft target. I was at Hardest Hit Leeds, I thought I was the only one there with mh problems until some people contacted me on twitter after I blogged about it. We are invisible and ‘our charities’ are not helping us. Keep fighting the good fight and remember – we’re with you even though you can’t see us.
I fear that MIND and RETHINK have been seduced into the system
From Time to Change:
Between 2008 and 2010 we saw a 2.2% improvement in public attitudes. However, in 2011 this dropped back to a 0.8% improvement overall since the launch of the campaign.
This dip reflects international research into public attitudes, which suggests that attitudes towards ‘vulnerable groups’, including people with mental health problems, can harden during periods of recession and higher unemployment.
I’d add to that this ‘dip’ also represents 2 years of sustained political and media attack
I should be going to gym to exercise after orthopaedic surgery, my physio expects me to. I should also be exercising on an ongoing basis because I have osteoporosis, but I have been harassed and interrogated by staff demanding to know my employment and medical history, so now I’m finding it difficult to go and with each programme like this I fear how I could be perceived.
How can I reconcile what I need to do with the reality that anyone seen between 9-5 is suspect. It also makes claiming concessions difficult because again, that’s open to interrogation and makes you suspect. So I either stop going or fork out the full membership price to be less ‘visible’.
The charities have no interest as with everyone else they are protecting their own incomes
Spot on Dawn and essential reading methinks so please share and retweet guys as the extent of the anxiety, misery and despair caused by this Government’s and the last one’s scapegoating attacks on the disabled needs maximimum publicity.
I attended the Hardesthit London gig too and was also glad and proud that you managed to snatch the mic to get in a word for people with mental health issues at the last moment on a day when it seemed like the main mental health charities had disowned us or at the very least decided on our behalf that they had better things to do than help us protest the Government and media scapegoating of the disabled and the vicious cuts agenda . On the other hand it was a Saturday and leading Mental Health charity execs like Paul Farmer of Mind are only paid almost £100k a year and it’s probably a bit too much to expect them to dig into their own pockets for the bus fare to attend a big scary rally on their day off with the recession and all that.
Mr Farmer hasn’t commented on the Panorama programme either but there again , he has managed to tweet his support for the Lloyds bank boss – was first thing I rushed to do when I got up this morning too – plus he obviously hasn’t had time to watch a nasty and sensationalist state tv programme attacking his charities service users because , priorities being what they are, he’s been too busy judging the HSJ 100 most influential in health awards, a crucial task that doesn’t allow any distractions.
Mind Chairman & BBC regular Stephen Fry was also strangely quiet on the Panorama front , that said, his heartbreaking tweets about his delayed flight made news headlines so at least he covered the more important human story .
#OccupyBBC anyone?
I suggest that this poem written by Dawn should be sent to all newspapers and TV production teams, Government and MP’s too, it’s the most moving account I’ve read on the subject of illnesses less visible. It should be on every Atos assessment wall and in Jocentre plus training packs.
http://dawnwillis.wordpress.com/2010/12/11/on-invisible-illness/
Missed last nights programme but saw the Humphries one. Going to get on the iplayer now.
Blessings Dawn.
Yes, agree with Miss Anon and Mr Cameron (not David lol). People cannot rely on a Charity, they are a business first and foremost, and I am shocked that the Government managed to find so much money for this Time To Change project, it was hardly a little donation, it’s millions and could be much better spent providing a service instead of more celebrity hobnobbing.
They were advertising jobs recently paying upwards of £30000 in some cases, deplorable.
Grass-roots campaigning is the way forward.
Good post Dawn, like your blog. Wish you well in Media Awards, you are a deserving rebel.
I’d like to be proved wrong, but I fear that Miss an nonny mouse’s suspicions are well founded. Never mind your actual service users’ interests, it’s the organisations’ interests that come first for some and they are unlikely to bite the hand that feeds them, even while that hand batters the vulnerable.
We love it when you talk, rant and share your wisdom Dawn. This is a great post. We are getting the same crap from a right wing government in New Zealand, one that unfortunately is probably going to be voted in for a second term at the end of this month. Right wing votes are so easy to catch with this kind of stuff. We have a society which is becoming more and more unequal. Keep up your great fight and I wish you a quiet and warm heart.
Hello Dawni. I dont darewish you a good day.
Im totally with you Dawni an all you bravely say. and for others to say buy a pet through direct payment’s to keep lonelyness at bay really got me angry yes angry).
I was at the fron in Newcastle. in total I only saw three people I knew within Mental Health. I done my usualnetworking in the could as best I could.
What theGovernment and B.B.C. IS UTTERLY SHAMEFUL.. Scaremongering for their own ends. Like many others Dawn I live in both percieved fear due to my hidden Mental illness and the very real fear of STATE INDUCED TERROR). Im not brave enough anymore to mention my life long hidden physical illness. I have endured enough traumatic stigma and Oh so real ridicule.
May I be brave enough now Dawni to wish us botha nice dayand to everyone else who feels the same. and to those who care. Paul xxxx . .
Could add two more words
1 Bought
2 Off
Two words for you about why mind and rethink aren’t there with their paying members.
1. Paul
2.Burstow
It’s part of the condition of the 16million pounds he’s found for the time to change campaign that they aren’t seen to be biased against government, or so I have been told on good authority.
It was laughable television, but sadly it’s the kind of crap this nation feeds on, you are right when you say it just adds to who they want to blame for the state of the country.
BBC should be ashamed for airing such right wing clap trap, suddenly Panorama has become a lobbying for the Govt programme.
Dawn
I was at the Hardest Hit event that Saturday and was very moved when you grabbed that open mic and gave us a reason to remember people with what you described as ‘invisible illness’. The cheer you received was deserved and it was only today that I connected you with the Quinonostante who tweets.
My son has Autism, and I agree with everything you mention in your post, although we were there with our banners, and it’s me with the pounding heart wondering what will become of my son.
Hope you sleep better tonight, you deserve it, and you do an amazing job.
Sarah
I’m worried about the worthy/unworthy focus too. Am especially worried about people with drug and alcohol problems too. There is lots to be discussed regarding the impact on mentally ill people as the NHS is changing in regards to treatment too. In a way that isn’t compatible with benefit cuts. Why aren’t social workers GPs and teachers not voicing their concerns too.
short answer – they are reading the runes and more concerned about their own jobs than the invisible ones