Thursday, 15 August 2013
I was in Upper Sixth and gearing up to take A Levels in English Literature, History and Politics when in I got sick in December 1996. I went from getting 3 As in my mocks to not being able to get out of bed in the space of a week. I spent the days I should have been doing my exams alternating between vomiting, sleeping and sobbing myself to sleep in bitter disappointment.
Everyone helpfully pointed out that I could take re-sits and the pedant in me resisted the temptation to point out you can't re-sit something you've not sat at all and gritted my teeth instead. I was still missing out even if I took the exams a few months later. The excitement and plans of my peers wasn't something I could share. They were preparing to spread their wings and leave for new lives. I was preparing for surgery. I felt so left out of their milestones and newly adult interests, like a child listening to the grown ups talk.
Overnight I'd lost everything that gave me pleasure and structure. Friendships were strained, my academic aspirations stunted, plans put on hold and my reputation amongst my peers as the smart one who was going to excel destroyed. And worst of all, I had no idea if it would come back. Would this surgery sort me and I could continue with only a small blip? Or was I destined to stay on the sofa watching This Morning forever?
I don't remember very much about the day all my friends got their A Level results now, but at the time it would have qualified as my personal hell. Listening to their excitement and achievement and knowing that my joy for them was mainly being overwhelmed by massive disappointment and a sense of failure in myself. If you persue the academic route past GCSE, you are told that your exams are crucial and that to come out with no grades is the very worst thing that can happen.
Well, I'd come out gradeless and gallbladderless and all around me was the insistence that without A Levels my life was over (and that was from the teachers and government, not the supposedly histrionic teenage girls...) The only thing I was excelling in was disappointment. I was gutted, but I managed not to scream 'you got a B at A Level and you're fucking crying? How do you think I feel?' at the friend who insisted on telling me this in detail and then not inviting me to the results party with everyone else. (I recently saw her lie about her results on Twitter and chuckled evilly.)
No, I think I took a path of the higher moral ground and cheap booze that night and concentrated on the whole re-sit thing. November was totally the plan and then have the rest of the year off and go to uni in September 1998. I'd study until then and then earn some money so when I got to university I'd be older, wiser and richer than my peers. Dead simple.
Until I discovered they'd abolished November re-sits that year. June 1998 was the earliest I could do my exams, but the only way to be legally able to sit them was re-enrol at school. My headmaster kindly offered to bend the rules and just shy of my 19th birthday I was sat in a school uniform like the new girl again. I think I lasted 6 weeks. I don't remember because the fatigue was so severe I felt like I was hallucinating.
June came and went and as my friends arrived back from their first year of uni, I was missing my A Levels for the second time. In September I enrolled at tech and claimed Income Support to reduce the cost of 3 A Levels from a grand a pop to £30 each. I'd have been pissed off if I'd spent the full amount. I missed my exams in 1999 too in a haze of vomit and pain.
Next September I did night classes to cut down the amount of energy leaving the house I needed to expend. I also dropped the two I didn't really need to get into university as a 'mature student' and finally in 2000, just as all my friends graduated, I sat my English Literature A Levels. Unsurprisingly since I'd been studying the syllabus for 5 years, I got an A.
It was an absolutely massive anti climax. Each peer group I had befriended and studied with had already sat their A Levels and moved on to something else. They weren't interested in my seemingly childish achievement as they had more adult thoughts now. I don't know why I was surprised since none of them had offered much empathy or understanding of my repeated rubbed into the wound disappointment over the almost four years I'd watched all of them grow up, get grades and basically leave me behind.
One friend came with me to get my results, but none of the rest seemed bothered. Despite having sat with a rictus grin for each of their exam results parties, politely not wanting to ruin their night bellowing 'it's not fair' and then sobbing into the punch, no one cared to go out and help me paint the town red. I met up with some friends, dying to celebrate my achievement and effort and was usurped by everyone wanting to stay in and watch Nasty Nick be evicted from Big Brother and eat Pringles. On a pie chart of disappointment, it's hard to say which was worse: getiing the results or not getting them.
I'd spent all that time worrying about my life being fucked up by my A Level delay, I'd felt like a silly childish failure who wasn't important because I wasn't hitting the same milestones as everyone else and I'd been hurt and rejected by people's lack of interest in my difficulties. I don't think ever admitted to myself how hard I was finding it. Told to think positively, I thought acknowledgement was giving in and I felt weak admitting that disappointment was ripping me apart. In hindsight, I'm not surprised I coped by developing an eating disorder. The one thing I was good at was being skinny.
I do wonder how well I'd have coped if I'd known that my fears were real and that not getting my A Levels really would fuck up my entire adult life? I'm now 34, have one A Level to my name, dropped out of my degree and haven't worked for 10 years. I've never earned above minimum wage and since I was 15, I haven't completed a full year of work, study or training without prolonged absence. I'm completely and utterly unemployable and my CV paints me as the most unreliable person possible.
Ot course, I know that I'm dedicated and resourceful and determined. That seemingly not sitting my A Levels but finally getting to uni isn't because I'm a flake but because I don't give up. All that being stopped in your tracks has taught me to flexible where I can be and to learn to adapt to new places and people all the time and to start again and see it as a challenge. These are skills most people don't have even now and I had them before my 20s. But ultimately when you're asked to write your achievements on two sheets of A4, they don't count and they go against you.
The only thing I'm abundantly qualified in is disappointment. It's a useful life skill up to a point, but I've never found it gets any easier the more you try it. It just mutates and twists into bigger uglier shapes. It's made me mature and it's made me less understanding at the same time. As friends start to feel disappointed with life as their 30s bite and their boyfriends don't match up as life partners, babies don't arrive and dream jobs and houses are beyond their grasp, I roll my eyes, mutter 'life's a bitch, huh' and then feel like a shitty person on top of everything else.
I try not to dwell on the enormous shitstorm of disappointments my life has brought where the rule seems to be that no matter how small my desire in life is*, it won't come true (almost all stemming from the same fact that i'm ill and have just got more complicatedly ill over the last 10 years). I've learned to adapt to day to day living and count my small blessings and on the whole I'm content and massively appreciative of what I can do and have achieved. But sometimes I just need to acknowledge how shit and unfair it is and not put a brave face on.
And that day is always A Levels results day. It sneaks out even though I don't consciously think of it in between. I'm torn between envy and irritation as those perky teens celebrate more academic achievement than I've managed and get to go out and celebrate with something that isn't a bastardised potato snack. The difference is this year, I'm not going to apologise for it...
*apart from better friends than I used to have. I have those in abundance and I love them.
Posted by gherkingirl at 00:17
Saturday, 20 April 2013
Last night was Friday night, end of the week, traditional time to chill out. Because I'm now prematurely middle aged, I decided to spend mine wearing my slippers and watching some telly. I caught up with some soaps and then decided having been massively enjoying Scott and Bailey on ITV and hearing such good things about Broadchurch, I'd give the new ITV drama The Ice Cream Girls a go.
It was introduced by the continuity announcer as having 'scenes of a sexual nature' but other than that I knew nothing about it. I primarily listen to Radio 4 so never buy a TV guide. I've never heard of the book it's based on. So imagine my shock when those 'scenes of a sexual nature' actually turned out to be a fairly explicit rape.
And by shock, I mean gut wrenching triggering, feelings of revulsion, total panic and a wave of sheer anger. One minute you're lying on the sofa, the next you're plummeting off an emotional cliff and trying not to be sick. I don't expect people to police everything that might possibly be a trigger to each person and in fact, I'm often fine with rape scenes and discussions of rape on something like Law and Order: Special Victims Unit. But the difference there is that I know what to expect on SVU and I can choose whether I'm in the mood for that or watching cats dressed as sharks on a Roomba instead.
I don't particularly want to rehash the trigger warning debate, but last night's lack of warning didn't just upset me. It enraged me. To describe a rape where the woman actually tearfully says 'you hurt me' as a scene of a sexual nature is massively irresponsible. It reinforces so many 'rape myths' once more. Rape is just bad sex that women regret. It's not rape if you've consented before. I't can't be rape if it's your partner, or he tells you he loves you. It can't be rape if you don't scream and kick and fight the whole way through. It's just a scene of a sexual nature.
I wonder how many people watched this disturbing scene last night and instead of learning that rape is degrading, often physically painful and usually perpetrated by someone you know, thought they'd just seen two people have bad sex? I wonder how many men saw an experience they've had and shrugged it off that she's frigid or bad in bed than realising they raped someone? I wonder how many women and girls still couldn't understand why a similar experience left them feeling so bad inside for so long when it was just a 'scene of a sexual nature'?
Pretending rape is just about sex rather than about power has consequences. It normalises abuse, misogyny and violence. It stops rapists and their allies taking responsibility for their actions. It prevents victims from coming forward and healing from their experience, trapping them in shame and silence. It stops the people who sit on juries understanding that it's not as straightforward as 'he said, she said' or women making accusations for the sake of it. It stops the police and CPS seeing that sexual offenders tend not to just target one person just once but often go on hurting and harming people for years.
I'm not suggesting that ITV cause all that singlehandedly, but when you place that in a culture than normalises rape all the time, where cases like Steubenville or Rehtaeh Parsons where even photographic evidence, confessional Tweets and jokes about participating in a gang rape, at best result in a jail sentence measured in months or at worst the suicide of a young woman, it is just one small building block in making sure sexual violence is ignored time and time again.
I was so enraged by ITV's dismissiveness last night that I got up this morning and sent an email of complaint before I'd even made my first cup of tea. I could just about understand not mentioning the scene at all in the continuity announcement, but to deem that people are more worried about smut than watching a woman being brutalised is bloody insulting. Especially when I've heard ITV warn about 'scenes of sexual violence that some viewers may find distressing' before on the Carla Connor Coronation Street storyline. I don't know if the fact The Ice Cream Girls was post watershed made the difference, but it certainly made my blood boil.
I'll let you know what kind of response I get from ITV. My money is on a variation of 'sorry you were offended' and 'bloody hysterical women' but who knows...
Thursday, 28 March 2013
Yesterday I had a moment's silence for the Social Fund. Previously a centrally controlled pot of money available to people under strict rules, it will be abolished in its current incarnation from the 1st of April. Its passing doesn't just mark the removal of my own personal safety net but a further dismantling of the welfare state.
The Social Fund was genuinely open to everyone. Crisis loans supported benefit claimants and those hit by unexpected changes to their lives of the worst kind. They fed you and clother you in fire, flood and fear when the insurance companies can't act fast enough or you don't have your documents to hand. Budgeting Loans and Community Care Grants offered opportunity and social mobility. A low cost, low interest option, they allowed for the risk of changing your life and trying to make more of it all.
All these grants and loans came in the guise of cold hard cash, a currency opne to misinterpretation, but also opportunity. As of April, they transfer to a council run scheme with each Local Authority setting their own rules from a non ringfenced budget and will become a combination of pre paid card, vouchers, food stamps at a food bank or allocated items. It's the realisation of Alec Shelbrooke's 'scroungercard' idea refused recently in the House of Commons. I warned then that was a decoy to distract from the eradication of the Social Fund and I take no pleasure in saying "I told you so now".
Sneaked in by the back door, this new incarnation of the Social Fund is in direct contradiction to Iain Duncan Smith's idea that claimants should take more responsibility, a mantra he uses to force through every change to welfare he dam well likes. The Social Fund now knows better than you what you should spend it on and offers only the barest essentials such as Asda cards for food only in Birmingham. I claimed a Crisis Loan to pay the shortfall between my Housing Benefit and my hostel costs when my benefits were delayed due to the address change of being in Temporary Accomodation. Being able to rollback the prices and slap my arse in Asda would not have helped put a roof over my head. Lack of flexibility and this patrician attitude would have had me on the street.
I then also claimed a Community Care Grant when I was rehoused. I was awarded £350 to furnish my entire flat and I was already told what i could or couldn't have. Cutlery was a non essential but curtains were fine (presumably so I could keep them shut and signal my scrounger status to my neighbours...) But within those boundaries I chose what I needed and I took responsibility, showing evidence for what I wanted, pricing it up and shopping around in my local area. I felt treated like a member of my new community and I've been able to integrate fully.
I've helped other people apply for Social Fund payments since. A friend got the deposit for her flat that way or she would have ended up homeless. A neighbour claimed costs for her 25 year old daughter's funeral costs after she was unexpectedly killed by a drunk driver. Clients have been able to keep their flats while in hospital or prison. Others got the cooker that allowed them to eat properly and take their meds, saving on relapse and hospital admission. We've helped people sleep in a bed for the first time in 4 years, heat their homes, get cars back on the road so they could start new jobs and not have to choose between heat and eat. Each one was a small event. No one ever got more than a few hundred pounds and they were able to take small steps that became big strides.
The conditionality and morality clauses such in Manchester's new Social Fund remove that fair and adult attitude and infantilise us all while allowing payday loan companies and supermarkets to make more money from more misery. These are organisations who don't even pay their staff a living wage and get state support in the form of tax credits, bleeding even more from the welfare state and leaving it in critical condition. The changes to the Social Fund will be as detrimental to stability and security as the bedroom tax and a test as to what other universal entitlement can be eroded in modern Britain. And unless they start specifying exactly what those who take out loans from tax payer funded banks can spend it on, you woun't be able to convince me that the whole thing isn't utterly ideological and unfair to the most vulnerable.
(The image above is by the very funny and clever @DocHackenbush on Twitter. Many thanks to him for saying it so well and letting me use it...)
Thursday, 14 February 2013
Today is to most people Valentine's Day, but it's also the slightly less Hallmark friendly (and a lot more important) One Billion Rising. Organised by Eve Ensler, it's a chance for women and girls to rise up, speak out and demand that violence against women and girls is taken more seriously with a view to being stopped. It's particularly important when you realise that the one billion of the title is the number of women on the planet who have suffered gendered or domestic violence, rape or sexual abuse. That's 1 in 3 of the entire femal population of earth. That means when you are in a room with three women at least one of them will have been a direct victim of fear and violence. It doesn't even cover those who have been made afraid walking down the street or harrassed at work or while socialising. It's a terrifying indictment of the way society normalises something so serious.
On Tuesday night I was in a room with 15 other women and each of us had suffered sexual violence. Despite it being a positive event, celebrating the completion of our training as peer led supporters on the unique Amina scheme through Eaves, where we take our experiences and use them to support and empower other women going through similar, it took me aback to think that every single one of us had been through this. As we ate sushi, socialised and eyed up a particularly stunning cake, I looked around at these beautiful, poised, well dressed smiling women and thought that no passer by would ever have guessed what we had in common. It was both poignant and painful to think how we could equally have been at a book group as making the effort to rebuild our lives from the hurt of sexual violence. There was no cliche, no distinguishing feature of victimhood, nothing to mark us out and with it the chilling realisation that violence against women can happen to any women in contradiction of all those ridiculous myths we hear trotted out each time the subject comes up in society.
As we talked and congratulated each other on 50 hours of bloody hard work, we didn't talk about what had happened, but what we could do now. We looked forward (not just to dessert) and the whole mood was strong, not strident. It was a place I never imagined myself standing. Even though I felt much improved on the days when I simply couldn't imagine ever doing more than existing after my rapes, when I started at Amina, it seemed like I would never really heal the raw gaping pain that was at the centre of my life and which affected everything. I wanted to join the scheme because the only way I've ever found of easing that sorrow and soreness is to campaign and agitate so that at least one other woman in London would not have to live through the same shitstorm I did. The abstract idea that organisations like Sapphire had changed because of mine and other women's campaigning was a start, but perhaps slightly selfishly I wanted to see that evidence in real life. I had wanted someone to come along and fix me, so I went looking to fix someone..
And I did. I haven't for various reasons actually done any pairing with another woman on the scheme yet. But on the way, I found myself fixed pretty well instead. In looking for something else I found an environment that offered support, acceptance and understanding that comes from having experiencecd the same things and wanting to work together because if it. There was no competition, no victimhood, no othering, just women who understood each other, working to explain emotions and responses and share. There was no angry denouncing of men, no impotent raging and frothing, no wallowing, no backstabbing or sniping or any other group of women cliches. Just encouragment to tackle things we could and change small things and to use the expertise we all have from having survived. It shifted something in me and I could finally understand why some women use the term survivor not victim. I could finally imagine not just surviving, but living.
Some of that came from looking at the politics of sexual violence, understanding the normal natural responses to trauma and being practical and pragmatic, but most of it came from meeting the other women I trained with who are truly brilliant. Kind, considerate, inspired, determined, decisive and funny, they showed me by example and their own efforts, opening my eyes beyond the self absorption of simply surviving. They shared their good days, big achievements and constant challenges, admitting to trials, tribulations and traumas and showing me that I didn't need to recover completely before getting on with life. I could be be flawed and fucked up and still achieve. Since meeting those women and becoming friends with them, I've achieved more than in the rest of my adult life put together. My life is changed beyond recognition but I know I will never outgrow them. While I am ridiculously spoiled and blessed to have other friends and family who have loved and supported me no matter how hard it, there was something especially important about meeting people with whom there was an immediate shorthand and mutual understanding and no need to have to look for the words for it all.
I can't thank them enough for the support and love and kindness they've shown me. I know that they will be brilliant with the women they are paired with and work toward helping when in simply being themselves they've given me so much. It has been wonderful to take such valued friendships away from this, but it has also been life changing to have my preconceptions of how women can't be trusted to work together shattered and disproved by a wonderfully sisterly (but non touchy feely) attitude at Eaves. I may not be singing, dancing or flashmobbing for OBRUK today but I'm making sitting in my pyjamas, drinking tea and talking about myself a feminist act by showing that women working together really does make a difference. So if you aren't doing any of the other OBRUK events be assured that being a friend to someone who has experienced fear or violence as a woman the other 364 days of the year is something to be very proud of. But if you want to do something proactive to mark the day, a donation of time or money to Rape Crisis or Eaves will share that kindness a little bit further.
Monday, 12 November 2012
In between trying to keep up with BBC resignations and writing obituries for Newsnight, the frenzy around recent revelations about child sex abuse in the UK has also centred a lot of attention on anonymity.
The role of anonymity in sex crimes cases has always been a red button issue. Victims and alleged victims of sexual crimes are guaranteed anonymity under law in the UK. They cannot in any circumstance, not even under parliamentary privilege Lord Campbell Savours, be named in public. This is in fact a criminal offence, punishable by a fine, as seen last week by the case of 9 people who named the victim of Ched Evans. This anonymity is extended to victims of historic abuse and child sex abuse no matter at what age they report or speak out.
Currently there is no guaranteed right of anonymity for those accused of sexual crimes. This was in fact abolished by the Tory government in 1988. It used to extend to everyone accused no matter what age the victim was. I've blogged before about the current government's aborted idea to reintroduce anonymity for those accused of rape against adult victims and while I still acknowledge there are big flaws with that proposal, I remain generally convinced that while emotions are so high and the system so poor, anonymity for accused but unconvicted sex offenders should be considered again.
I'm afraid I just don't buy the line that if we kept people's names anonymous before conviction it would affect the rate of conviction because other victims couldn't come forward. Well, I don't know if you've noticed, but the conviction rate is pretty piss poor under the system we've got right now. Even in cases where multiple victims come forward with identical allegations, they get ignored and nothing gets done. The John Worboys case did not get the conviction it did because the police allowed his name to be put forward. It didn't even get to court because of the number of victims involved. It got to court (as did Kirk Reid) because one officer pieced together several allegations over several years and because the Met held an internal investigation into the entire Sapphire Unit based around six cases and it became apparent that there was so much evidence against Worboys and Reid that the CPS couldn't not prosecute. But here's the thing, all that evidence was already there. It just hadn't been taken seriously until the Met was forced to investigate itself.
Both men were convicted with a clear jury majority and very little deliberation and sentenced to comparatively long sentences for their crimes. Only then did the police release their names to the public and appeal for further victims to come forward. They and the courts had used the current rules to suppress the name through reporting restrictions prior to conviction (basically to cover the Met's arse so their failings didn't come out in such an obvious way.) Countless more women came forward as victims of both men. No futher court cases have ever happened. But somewhere along the line, the Worboys case has passed in folklore as the example of how anonymity for the accused prevents convictions. The Met trot it out a lot, but then again, they're desperate to make themselves look good over Sapphire in any way. But annoyingly I see many feminists parrot the same line unquestioningly. I think I remember the whole PR episode slightly differently over both trials as my case was one of the six and I spent time dealing with both the Met and the press over that time. Not once did the Met mention either name even in private meetings with me about the issue nor did any of journalists who contacted me wanting a victim's perspective about police failings. In fact I was specifically asked by several journalists on both cases about the fact the names had been withheld until conviction.
I'm not going to re-hash the stuff from the previous post as I think I made myself clear, but I've had new concerns about anonymity since then. The Savile scandal broke because Karin Ward was brave enough to come forward to Newsnight and speak out while waiving her anonymity. I applaud her for a decision of unbelievable bravery. But I also have a worrying feeling about the precedent it set in the media and the public's perception (none of which is Karin's fault.) It transpired that there had been constant suspicion and accusation against Savile for nigh on forty years. But it wasn't really taken seriously until someone spoke out fully identifiably, creating an idea that unless a victim is prepared to waive anonymity, their allegation isn't worth listening to. It's raised the stakes. It's now not enough speak up, recount painful, traumatic and desperately personal details, fight your own corner with the police and CPS and in some cases, submit every single centimetre of your body to forensic examination; now you need to declare your identity to all as well.
Well, some of you might say, if you're going to accuse someone of a terrible crime, you should be prepared to face them and them know who accused them. But that misses the point. Anonymity only refers to public anonymity. The police, the CPS, his defence team, the judge will all know who you are. The fact they take pains to prevent that information being easily ascertained in court documents or to the public gallery doesn't prevent you as a victim having your entire life picked over to persue a court case or your attacker not knowing who brought the case against them (because it's the Crown that brings the case. Not the victim. They simply become a witness to the case.) All I see that comes out of waiving anonymity as a pre-requisite of an allegation being taken seriously is that allows more opportunity to measure that survivor by the arbitrary rules of the 'perfect victim' and since they are humans, not textbook examples, find them failing. This allows society to be more likely to see victims as liars because they aren't matching the preconceptions people have and become hostile to them.
And not just that, I think it actually does the opposite to what the people who are so worried about false allegations and people's reputations being needlessly ruined want. It adds a gossipy salaciousness that actually encourages trial by media and public instead of considered trial by evidence. Look at the feeding frenzy over Savile where the tabloids and gossip magazines have chased up every celebrity woman Savile ever worked with and shown endless clips of him making Coleen Nolan look like she wants to be sick as he manhandles her. It doesn't actually validate the victims' abuse, but turns it into a spectator sport ripe for comparison to everyone else's life. It actually minimises the experience and bravery of survivors to do this because obviously no footage exists of the rapes and more serious sexual assaults, so people see Savile paw young women on primetime telly and think that's all there was to it. Cue loads of people recounting the time some creepy old bastard felt their arse and you didn't see them running the papers or police, looking for money.
Oh yes, money. People who have never been sexually assaulted by someone rich, famous and powerful seem to think it's akin to a good tip on the gee-gees and a surefire way to get some cash. It never occurs to them that the majority of victims speak out because they are trying to defend themselves, seek justice and be heard after assault has rendered them invisible. They think they just want a pay out and it's all about greed because being attacked by a well known person is actually a blessing, not an incredibly traumatising and isolating experience. They have no idea that it's actually incredibly difficult to get compensation for sexual crimes as you must fit very exacting criteria, including not allowing the police to 'no crime' an allegation, the attacker not be dead and that victims of child sex abuse who 'consented' are already excluded from the criminal compensation criteria. They could of course persue a private case for compensation from their attacker or their estate, but legal aid for such cases have been withdrawn so they would have to pay their own costs upfront for a case that might rumble on for years and that has no guarantee of success and could leave them bankrupt as well as traumatised. As ways to get rich go, it's about as failsafe as a trip to Ladbrokes, but you don't get free tea or coffee.
And if you do get awarded any form of compensation, you will have your character further assassinated and see even more gossipy interest in the person who attacked you. Sunday's hatchet job by the Mail on Stephen Messham mainly seems to focus on the fact he was compensated for the systemic abuse he suffered as a child. Put bluntly, where there's a payout, there's guilt. No one pays out thousands of pounds to someone who alleged sexual abuse unless something happened. So when Messham spoke out about a senior Tory abusing him, everyone knew there was a story. Newsnight knew who Messham was (obviously) and because he'd spoken out before using his identity, they could build a report and a backstory without even checking things with him. His payout was their guarantee he'd be taken seriously when they broadcast the piece as it showed legitimacy as a victim. It's also the very thing that the Mail and David Mellor and others have used to slam Messham now that it has come out that he misidentified the Lord in question.
Declaring his identity and refusing to be shamed by being a victim has been used as a tug of war over Messham with both camps pulling and pushing and leading to an appalling situation where the victim has had to apologise and everyone else escapes blame and navel gazes. Newsnight knew fine rightly that the teaser of an identifiable victim, a political connection and society's need to look like it was being tough on abuse would lead to people naming names without proof. And they did in droves. Some did it because they genuinely thought they were protecting potential victims, others did it because their desire for gossip and political point scoring was greater than the desire for justice, some wanted to bait the PM and get good ratings. But the name of a man who did not abuse children got put out there and burned down the Bush Telegraph of the internet.
Everyone should have known better. They prejudiced any potential trial, they showed themselves to be shallow and not really concerned with the victims, they slandered the accused's name and they destroyed the reputation of the abuse victim. It was a perfect storm of supposition, presumed certainty and intrigue and in my opinion, none of it would have happened if Stephen Messham hadn't been identified so clearly. I don't know if he wanted to be identified for personal reasons and I respect him if he was willing to do that, but what I object to is Newsnight allowing him to do that without checking the details properly because what they did was make him the face that people associated with the scandal so when it went tits up, no one had an image and a name in their mind for the editor of Newsnight. Entwhistle might have gone over it, but it's Messham people are writing personal pieces about it that dredge up his life, family history and reputation. No one's asking if the middle class Newsnight editor involved might have become an attention seeker because his parents sent him to piano lessons at 8.
Newsnight had a duty of care to a traumatised man with a history of serious psychiatric problems and they fucked up completely. I am not suggesting that survivors are fragile little flowers who should be treated as damaged goods who cannot have opinions and speak for themselves, but I am suggesting that the media doesn't just run for short term ratings and hang a victim out to dry to get them. They should talk through the potential consequences and offer support if the survivor still decides to speak out with anonymity. But that's not happening. I've done a lot of press over the years about my rapes in various guises and still do if I feel it is helpful. It used to be very very rare to be asked to waive anonymity, but it has become increasingly standard. Just last Thursday I was asked (indirectly, not just me) through the women's org I volunteer for to speak to Glamour magazine, but only if I agreed to be photographed and identified. Cosmopolitan and Grazia do the same. Personally I don't think the organisation should be asking their clients to do this even if it guarantees publicity and funds for the scheme and I declined, stating that fact. If a survivor wants to speak out using their identity, then I'm not going to stop them or criticise them, but I'm going to speak up about the press blackmailing us by only covering sexual violence if anonymity is waived.
That makes me hugely uncomfortable. It plays into many rape myths and the idea of the 'perfect victim' in a very unhelpful way. Women's magazines will only feature the 'right' person: pretty, thin, white, middle class, probably had a conviction in their case or an 'acceptable' type of rape such a stranger/stalker rape. Not for the glossies will women who might fat, trans*, gay or bi, sexually active outside a relationship, working class, drink alcohol, take drugs or have been groomed be rape victims. Men will continue be invisible as victims and women will continue to minimise their experiences as 'not real rape' and so not seek justice and blame themselves not their attacker. The fact that 80% of victims know their attacker will be ignored and we'll continue to be asked to change our behaviour, not tackle rape culture and patriarchy. Cosmo will carry on printing 'good news' rape stories even though they seem to have relaxed their policy on only featuring victims who aren't single because to them rape isn't the tragedy, it's the fact you might end up single because of it. Much easier to push the idea that the thing to help you overcome the actions of a man attacking you is to find the love of a good man rather than seek to campaign for justice and resources, speak up about the culture that silences victims and allow women especially to support each other.
You, in this day and age of the internet when all prospective employers and partners Google you, are asked to permanently link your name to the crime committed against you so that a magazine or TV show gets its prize and moves on. It's actually long term victimisation that never allows survivors to move on and rebuild their lives. It's condemning them to be 'damaged goods' and feels like punishing them for speaking out like seems to have happened to Dominique Strauss Kahn's victim in New York. And it's not strictly neccesary to get the message out. I have successfully spoken out widely and never revealed my identity. 99% of media (print, radio and TV) have been very happy for me to use my alter ego Helen Jones and never asked me to reveal the real me. In fact I considered doing so over my compensation and the BBC journalist refused to take the case if I did. My family also asked me not to since we have such an obvious name and my solicitor advised me not to. Plenty of people do know who I am and yet they've never exposed me or accidentally revealed me and in hindsight, I'm glad I didn't expose my identity when actively campaigning. But when I was utterly possessed by the need to be taken seriously and heard by someone because the police had let me down so much, I could very easily have thought that it was the magic bullet to declare my identity and done so, only to have been left to deal with the consequences by myself for years to come. The media can be very persuasive and I'm concerned they sell a scenario to trusting and desperate people who think the reporter really really cares because they've spent hours listening to your story and I think anyone who waives anonymity should have some support and advocacy when doing so.
But the media also has a role to play and that role is to stop putting pressure on survivors and seeing them only as the means to an end. I'd like it if we could expand the discourse on sexual violence and get people talking about it more, but ultimately I think in this case it would be better to have less said in the media, but much better than risk repeating the truly cavalier attitudes of recent weeks that have put survivors under unbearable pressure, threatened innocent people's reputations, made it easier for guilty parties to hide in the shadows and made it more overwhelming and difficult to report rape of any sort. I'm not suggesting anonymity for both parties would solve all the problems of this rape culture and everything will be glitter and kittens in comparison, but the situation isn't working right now and no one in the media, let alone Leveson, is addressing it any other way so I'm not sure what else can be done that makes an immediate difference?
Friday, 12 October 2012
We all know the answers. What chance would a girl from an approved school or Broadmoor have had if she'd spoken up against a man draped with honours from the British Establishment and Catholic Church and who spent Christmas with the Prime Minister? None. She wouldn't have been believed for one second. And so these victims remained abused by the visibility of their attacker and he carried on unchecked and growing in confidence with every year.
You shrug and say 'but that's how it was then. Things have changed now.' And I say that, no, they haven't. Women still live their lives in a culture where the default setting is not to believe them. And not just about rape. About everything. This runs on a spectrum of 'you're lying' to 'are you sure?', taking in destinations such as 'I think you're overreacting' 'well, I haven't seen anything' and ' why don't we wait a few months and see what happens?' It happens whenever women try to report anything that happens to them from a particular Pill causing problems or periods being painful (it on average takes 8 years to be diagnosed with endometriosis), or their child just not seeming right in some way, to saying that that comment in the street wasn't a compliment or that when their partner does certain things it scares them. Their word about wanting or needing an abortion has to been agreed by two doctors while a declaration that you don't want kids is always accompanied with the order that 'you'll change your mind.' Women are constantly seen as unreliable at best, deceitful and out to destroy someone at worst.
And yet the irony is that the destructiveness of disbelief affects women primarily. They are the ones who live with the consequences of being disregarded, maligned and told their word is neither valid nor valuable. This has the effect of silencing women everywhere in life. It's very hard to stand up at work and suggest something unknown or risky with conviction when you're constantly being told you're not even an expert on yourself, your life and your body. This undermining seeps out into the rest of society. Men learn that their word is always seen as more important and often feel cossetted by that protection. Girls, who are seen to combine the silliness of children with the duplicitity of grown women are left horribly vulnerable and boys internalise that being seen to be girlie in anyway is the worst thing that could happen to them.
Being believed is like being scooped up in the strongest pair of hands. It's like being attached to a harness and rope while climbing the unpredictable rockface of life and knowing that you can hug tight or take a risk and swing out and that you will be fine. It builds confidence, it forms a barrier than makes it hard for the corrosiveness of self doubt and loathing to errode. It allows you to pick yourself up and face life without having to waste time and energy on fighting your way just to be heard let alone your actions acknowledged. It's vital to be able to heal and move on from painful paralysing experiences and unlike complicated interventions, it's free and easy. It just relies on kindess, humanity and being a decent person with a certain amount of humility.
I have faced a lot of disbelief in my life. The most striking example, of course, was trying to report rape. The first time, there was just a wall of doubt and denial driven by the fact that my attacker's uncle was well connected and there was a delay in reporting. I'm not stupid. I knew that not being able to produce forensic evidence would be a stumbling block. I half knew that reporting wasn't going to go anywhere, but having been told that what I was saying was unladylike by the woman at Victim Support (who could barely hold the phone for pearl clutching) and then having my GP refuse to note the assault on my medical notes, I needed an acknowledgement, some visible marker of what had happened. It was too much to comprehend that my whole life had been turned upside down and yet there was nothing tangible to see. I presume this is a similar emotion that women who have had miscarriages and stillbirths feel and why momentoes, photos and death certificates are so important? I wanted someone I could trust, who was impartial and who could be proactive to say yes, this happened. I needed to be believed. I simply couldn't believe this had happened and I needed permission to let myself start addressing it in order to make sense of it.
Instead I got total hostility, enhanced with sneering and judgement. I could come to terms with him not being punished as long as they'd investigated. Investigating is a form of belief. Ultimately I'd have liked the bastard to face some consequences, but I could more easily have come to terms with being told 'I'm sorry. We believe that he did this to you, but unfortunately because we can't find this evidence/the law doesn't allow/we can't prove it, we can't do anything, but we'll bear it in mind.' It would have taken less time that the lecture they gave me and I'd have gone away feeling something had been done, even though really it hadn't. Call it placebo policing. Call it being half decent to a traumatised victim. It certainly wouldn't have left me feeling so angry and helpless and fucked up.
I think I could have coped with that disbelief, and the version a few months later when the police seemed to believe I'd been raped that time but not that I deserved anything being done about it, if it was an isolated event, but disbelief was coming from everywhere and had been for years. Since the age of 14, I have suffered from nausea almost daily and then strange abdominal pains. I went to doctors repeatedly and was told it was all in my head, was I sure I wasn't pregnant?, it was lady trouble, growing pains, just something I had to live with and a multitude of other disbelieving, don't give a shit responses. Of course, it wasn't any of those things. It was gallstones and the offending organ was whipped out in 1996 and the problem was solved.
Except it wasn't. The nauses remained, now joined by literally gut wrenching diarrhoea and unexplained pains. After months of strong painkillers and hospital visits, the pain was found to be secondary stones. All fixed. Except that 16 years later my life is still dictated daily by nausea and diarrhoea. At least 9 GPs have disregarded it, telling me it can't be that bad (despite admissions to A&E on occasion and extreme weightloss at times), that all women get a bit of a dodgy tummy at that time of the month, I'm attention seeking, I eat too much fat/too little fibre, I've only got IBS and even though I'm medicated for both conditions, I don't really need it but they're just humouring me because after all it's well documented that I'm mental these days. Desperate and unable to work because of it, I asked to see a gastroenterolgist for 6 years and was refused time and time agian. I wanted to argue, I wanted to stand up and say 'listen to me', but having been disbelieved that I'd been bitten, that I'd been raped, that I was really properly homeless, that I'd had no real investigation by the police, that I really really did want to complain about the police, that my drinking hadn't caused the second rape, that I qualified for benefits, that I needed psychiatric help, that I was ill, that I was worth being helped, that I wasn't looking for attention, I just couldn't find my voice for that. I took the pills and carried on dealing with everything else.
And I met some people along the way who don't ask for explanations and justifications, but who just believed what I was saying. My solicitor who backed me to the hilt over my compensation claim and practically used her buff folders as pom poms as she cheered me on to claim the compensation that was a tangible acknowledge of what had happened. The therapist at the Chronic Fatigue clinic who convinced me I was ill and not just imagining it. The employment advisor who heard me say I'd never work again and who believed me that I felt like that while believing I still had a lot to offer. Friends who didn't quiz and query and question, but just accepted me warts and all. And eventually I felt ready to stand up to the GP who was blocking me and move surgeries. I stormed into the new one fired up and determined to be believed and was met by no resistance at all, only concern and help. Within 6 weeks I was sitting in front of a gastroenterogist, mouth open to defend myself, only to be interrupted by him and told I had quite definitely got something very wrong with me, it was no more in my head than the man in the moon and it should have been sorted years ago.
Like many people who have their gallbladders removed, I suffer from something called bile salt malabsorption and biliary gastritis which is basically a fancy way of saying that without anywhere to store bile, the stuff is sloshing round in huge quantities in innards making them angry and inflamed and causing terrible nausea and diarrhoea. It's not serious, but it's not pleasant and the longer you have it unchecked, the harder it is to control. But none of that really matters. The kindness and respect and belief of the gastronenterologist confirming what I knew all along was medicine in itself. That 30 minute consultation did more for my mental health than the 100 hours of therapy I've had.
All the psychological help in the world isn't much use when everytime you try to trust yourself and your feelings, it is undermined by someone's else disbelief. It just makes you more confused, more torn and feeling under greater attack.
But what happens if the person talking to you knows you're actually wrong? What if the gastroenterologist had been utterly sure I did have IBS? What about all those people over the years who knew that my eating habits were in fact totally fucked up and not normal like I insisted? Or if you can see that someone is drinking themselves to death? Do you just take their word for it, show no challenge and believe them no matter what? Not exactly. Having a belief isn't the same as believing someone and pushing your belief above all else, even if it's correct, simply raises the stakes. It makes the person in denial have to spend their time and energy on battling with you, not dealing with themselves and looking at their behaviour. It turns genuine concern into a battle of wills and in repeatedly explicitly telling that person you don't believe them, you also tell them they can't come to you and talk to you even things change because you don't trust them. You can express concern, you can remind the person that you're worried and that they don't have to put up with things and deserve better, but you will never help someone get to acceptance faster by disbelieving them. It's counterproductive.
Nothing pushes my buttons more than that air of disbelief. When you ask those forensically minded questions about what I did when I was raped that sound like you need tangible proof over my word, you disbelieve the biggest thing that's ever happened to me and if you disbelief the big things in my life, you can't believe the little ones. You're doubting me to my face and yet expecting me to not only put up with it but not question you in return. You've put me in an impossible situation where if I try to prove I'm right, I'm almost trying to prove a negative. It's like the more you tell someone you're not mad, the crazier you sound. I can hear myself frantically defending a point so trivial as to be inconsequential and thinking that I sound mildy hysterical to myself, let alone anyone else, but unable to stop in a frantic, out of control way.
It's a trait I'd dearly love to remove from my repetoire. It plunges me into a vortex of self doubt, anxiety and PTSD, but not only can I not avoid it, I don't want to lose the knack as it's engrained into the benefits system on which I am completely dependent. To qualify for sickness benefits, a person (or a panel) will quiz you about the absolute fucking minutiae of your daily life. A recent tribunal for DLA saw us spend a good ten minutes on what I'd do with a pork chop and another five on my tea making skills. No matter how genuine you are, when someone asks you to go through the making of a hot beverage second by second, it's impossible not sound like you're lying. Truth does not respond well to slow motion time and the more you try to correct the fact it sounds wrong, the worse it gets. It's like trying to walk in a straight line when pissed. You wobble more when you think about it. For me it's like being back in the police station. I feel as exposed as when they were shuffling the photos of my naked body, but the stakes are higher. It's my home, my sole income, my ability to survive let alone thrive. It all depends on someone believing me. I'm not optimistic.
I guess all I can do is learn to believe myself. The self fulfilling prophecy is that after years of being doubted, I really believe myself or believe in myself. I find it hard to accept that sometimes, especially in the matters of my own life, I know better than other people and that generally my instincts have been better than not. But I don't find it hard to believe in other people. I never apply the same doubts I have about myself to other victims who come forward and I find it easy, in fact edifying, to be their cheerleader. And I wonder if that's how we learn to cope? We throw ourselves into supporting those whose situations mirror ours and hope that some self belief reflects back on us and that makes it easier to deal with that constant inbuilt doubt toward women? Do we gradually create a wave of women who are able to stand up to that by standing together and sharing belief amongst ourselves?
I don't know, but I really hope that the discourse round the Savile victims and the work done by the Mumsnet campaign and hashtag of #Ibelieveher are starting to change things slowly, but surely. I think it's obvious that the culture of disbelief creates more chaos long term than it seeks to calm or ignore and does not serve the majority at all. We need to start reaching out and supporting people who try to tell us things we don't want to be bothered with, no matter what it is. Only then will we not hear the phrase 'just the women' again in a hurry...
Posted by gherkingirl at 10:00
Saturday, 29 September 2012
After around 20 years of having chronic fatigue I've lost patience with it and decided that something must be done. I'm sick of never knowing how I'll feel from one day to the next or what nice thing I'll be missing out on next. So when my mental health therapist told me about a Chronic Fatigue unit at my local hospital, I moved faster to the GP than I knew I could and asked for a referral. Barely any time later, I was there and things were beginning to looked at.
Chronic Fatigue is a peculiar condition. Nobody is quite sure exactly what causes it and half the time, most of them can't even agree what to call it. It can also be known as ME or Myalgic encephalomyelitis, but even then some people say they are slightly different beasts even though I've never got a straight answer of them as to what the differences are. Neither illness is just being 'tired all the time' or 'yuppie flu'. In the days of fainting couches and smelling salts, it was known as 'neurasthenia'. I'm not fussed how other people describe their illness, but I prefer Chronic Fatigue as I feel it conveys the jist of my illness to people who know nothing at all about it (while also being easier to spell) than myalgic encephalomyelitis.
Unsurprisingly fatigue is the main symptom of CFS/ME, but not the only one. As I said it's not just being tired. Fatigue is more than simple tiredness. It's more like as if part of your very being has changed. It's like wading through treacle, like craving sleep in the same way you do water when dehydrated. It affects mind and body together. It's unpredictable and cruelly with CFS the fatigue tends to be post extertional and out of proportion to the extertion. So while a healthy person would expect to be tired after digging the garden or swimming 5 miles, a person with CFS can be fatigued to the core after taking a shower or taking the rubbish out to the bin. Sometimes the body plays tricks and lets you feel 'normal' while you're doing something like walking round the shops or having coffee with friends, but a level of utter exhaustion catches up with you the next day that is like a hangover, leaving you incapacitated and blurred with a lassitude that cannot be shifted by sleep or rest.
This exhaustion is garnished with other symptoms to enhance just all encompassing it feels. Your brain is fogged, your joints hurt, you have constant headaches, swollen glands, sore throats and a variety of unexplained digestive issues. For me it's best described as having the onset of proper influenza where your body feels barely able move and everything twinges and aches unspecifically while also co-incidentally having a hangover and a tummy bug while in the first trimester of pregnancy due to extreme nausea. While this illness won't kill me or like other people with ME/CFS lead to me being bedbound or needing to use a wheelchair or mobility scooter, it does make normal living bloody difficult and render many days of my life feeling miserable, hard to bear and deeply unenjoyable. The only surprise is that's taken me this long to lose patience with it all and seek help.
But hang on, didn't I just tell you no one really know what causes CFS? So how can you seek help? Well, that's just about the most contentious question in modern medicine. The current treatment for CFS/ME is based round Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) leading some people with CFS/ME to believe that modern doctors see CFS/ME as being all in the mind (or at best a mental illness and at worst a spurious made up invention by lazy people). While I don't doubt that a lot of people are sceptical about CFS/ME, I see the CBT route as being more about helping people cope better with a bad situation. It's used for other illnesses with a fatigue based component like Post Polio Syndrome with varying levels of success as you would expect since no two people are the same and no therapy or medicine works exactly the same for everyone.
However not everyone else agrees. Suffering from Chronic Fatigue is an odd beast. For a start it's the only illness I know that no one can quite decide what it is and where one of the symptoms seems to be competitiveness. Some people say that the illness is Chronic Fatigue Syndrome and that can include people with Chronic Fatigue, post viral fatigue syndrome and Myalgic encephalomyelitis (ME). Some say that it isn't a syndrome, isn't capitalised and is completely unconnected to ME. Some use the names CFS/ME interchangably. Some think Chronic Fatigue is all in the mind and that ME is a neurological illness caused by auto-immune disease or inflammation of the brain or viral infection or some use it as the basis of HIV denial. No one can agree what the illness is, what it's called or how to tackle it.
This makes trying to research the illness almost bloody impossible. You know you're desperate when you willingly Google an illness, but unlike a normal trawl through WebMD or the equivalent, I haven't come away knowing anything more definite about my illness. Instead I've mainly read a lot of people trying to claim a name for their illness and trying to insist that their illness is worse or more real or more serious or more worthy of research or harder to cure or just different to the other person's. A lot of ME sufferers prefix that name with 'neuro' and insist that CFS isn't ME and you must have a diagnosis of ME before you can use the word ME, but not one has been able to tell me how to go about getting a diagnosis of ME instead of the apparently vague and seemingly lesser Chronic Fatigue (let alone whether you have the syndrome or just the descriptor). There's some muttering about how treatments for CFS don't work for ME, but no definition of the difference between ME and CFS so you know which treatments to try.
Realising that the internet isn't the best source of unbiased info, I turned to one of the ME charities. They elaborated that they also give help and support to CFS and post viral fatigue syndrome and use the umbrella term, but don't offer much detail on their site as they understandably want people to join their site and give them money to access detailed information, thus helping the cause. Unsure what exactly I was after, I phoned them to get some advice and was treated to another dose of competition between Chronic Fatigue and ME but with a side helping of patronising when I enquired if they had any info about ME/CFS (their term) and mental health issues? It was spelt out to me as if I was a 3 year old that while CFS might be psychosocial, ME isn't and thus isn't a mental health condition (and whisper, is more serious.) This got my goat for the fact I'm finding it fucking frustrating after more than the half the years of my life having been turned upside down to be told I'm not as sick as (insert correct comparison here) all the time. I also clearly explained that my mental health had developed separately and was given a real blast of disapproval that I'm weak enough to be having mental health issues at all (even though many people with chronic illnesses of all kinds develop them.) I hung up when I started getting a disapproving tone about undergoing the treatment of Cognitive Behavioural Therapy (CBT) at the Chronic Fatigue unit at King's because 'oh, you've only got a diagnosis of Chronic Fatigue, not ME'? as if I'd failed the entrance exam. Not once since I got sick at 14 have I cried over my health, but tears were pouring from my eyes after this scolding.
Well, here's the thing. I've actually got a diagnosis of both illnesses. I've had the diagnosis of ME since 1996 and the one of Chronic Fatigue since 2011. I tend to describe myself as having Chronic Fatigue to people when I have to explain my ill health because almost no one knows what ME is and when they do they associate it with 'yuppie flu' and the term gets me nowhere fast. Chronic Fatigue, while possibly inaccurate, at least conveys the main problem I have in words people understand. I was diagnosed with ME 16 years ago and precisely nothing happened. I sat on the sofa for nearly five years until I felt well enough to enter back into the life someone in their early 20s should have and apart from giving it a snappy title, the medical establishment didn't do much until I went to the CF unit late last year where they gave me a tentative diagnosis of Chronic Fatigue and began running medical tests alongside beginning the CBT programme.
I wasn't thrilled. I was hoping for a bit more to be honest that the not very highly rated online CBT system and withdrawing about a pint of blood each go. I wanted some fireworks, something definite, some answers, not just palmed off with tests that had been run before and therapy that people had suggested was all about trying to convince you that you weren't really ill. I took the self help manuals they gave me and sulked gently until the opening session, preparing to defend myself that I really was ill, even if I didn't know the exact name, and that my mental health issues were not the cause.
My prickles were flattened immediately by both the calm demeanour of my therapist and the sheet of blood test results. Far from telling me I wasn't ill and it was all just in my head, both told me I was definitely sick and in fact, probably sicker than I'd thought. The blood tests indicated problems with my thyroid and Vitamin D levels (which was oddly a shocker to this shade loving SPF wearing agoraphobic) while flagging up further things to be investigated over my liver function, potassium levels and heart, my B12 and folate levels (my very high folate level seems to hint at a B12 deficiency) and my weakened adrenals. I was temporarily thrilled. Underactive thyroids and low Vitamin D levels cause fatigue. All this ME/CFS stuff was going to be irrelevant. I just needed those sorted and I'd be fixed!
So I began the talking stuff while we waited for the bloods to be re-run as comparison. I thought it would be irrelevant long term, but I liked my therapist as a person and was happy to chat to her. Like any good therapist she could get a conversation going and then astutely pick out information you hadn't even realised you'd given. She picked up on several things with me. My routine was poor and I was doing the classic cycle of boom and bust and draining every drop of energy while I had it and then lying drained for days afterwards. I also wasn't eating regularly. And these things needed to start changing.
We began concocting a timetable so that I could structure my day, rising no later than 9.30, eating something within an hour of that and resting at 11am, before eating lunch by 1.30 and resting again around 2, but not napping, popping outside for at least 5 minutes for fresh air and then going to bed by 11pm. I was also encouraged to try and stop what I was doing before I felt the familiar wash of fatigue and rest and return to it. It was all so very basic and considering I'd been expecting to be sent to the gym for 5 hours a day, a bit anti-climatic.
And hard. Really really fucking hard. All these simple basic tasks are rendered awkward and semi-impossible by fatigue, but add in the very disordered thoughts I have about food and the depression and anxiety that robs me of motivation and dynamism, it felt insurmountable. My first 11am rest was a whirling maelstrom of intrusive thoughts, bleakness and reliving as my brain swirled and raged and refused to switch off unless I promised it a long sleep on the sofa. Eating a cereal bar in between meals when I felt my energy drain was like choking down the removal of all I believed in. It was ironically exhausting, emotional and overwhelming. For several weeks I felt physically beyond awful and my mental health was battered and I felt tearful and emotionally battered in all ways, reserving all my mental energies for hating Atos with a passion as the only reason I was sticking with this was to make my migration to ESA easier later in the year.
Using my usual tactic of sheer bloody mindedness and inability to reverse a situation, I stuck at it. I'm not sure for how long as the mental and physical exhaustion seemed to make time stretch and distort, but several months at least. But then one day I started to notice something. Instead of struggling with the emotional hell of resting, my brain knew it was 11am on the dot and I slid onto the sofa gratefully and there was only calm in my mind. I found myself eyes closed, deep breathing, mind neither blank nor racing and feeling utterly refreshed at the end of 30 minutes. It was odd. I haven't felt refreshed by much for years, but there was a distinct boost. I felt rested. And with it, I felt my stamina begin to grow and I felt it less pressing to have to see things through to the bitter end without stopping. I could pause and return feeling refreshed. I was getting much more done and having fewer days of highs and lows. I was 'conserving and preserving' instead of 'booming and busting'.
This is not to say that people with ME/CFS would be cured if they rested more, ate more regularly and just tried harder. Resting and pacing has not cured my underlying illness. It has simply helped me know my own limits and teach me to work better with my body so I give as well as take. I have fewer days where I feel energetic and normal and like I could take on the world and I miss that, but have to remind myself that the pay off for losing those highs is escaping the lows. I've begun to see the interplay between my mental health issues and my physical conditions, but not everyone has that connection to address. My digestive issues haven't improved one jot and I've just grown more frustrated by them as I realise just how much they hold me back. My memory has worsened since I started treatment in February, leaving me unable to recall things from 30 seconds, 30 minutes or 30 days before at times, but fine on 30 years ago. It has not been a magic bullet or a cure all and I have found myself wondering how it would apply to people who are much more incapacitated than me.
But I am so glad I am doing it. I feel it's enhanced my life hugely and it has built upon the treatment I had for my mental health issues (I realised my agoraphobia was also driven by a fear of becoming too tired or ill when outdoors to get home again or become physically vulnerable.) I've become more accepting of being ill. Until now I've hidden it and been ashamed of it because it seems so wrong for someone so young to be so tired. I've made excuses and obfuscated and lied to people. But the last few months, I've learned to be honest about my capacities and so far I've received much more support and understanding than previously. I thought I was protecting people from my illness, but I was really telling them I didn't trust them enough to be honest. A huge cloud of shame has lifted. I no longer feel stupid and like a weak person. I feel able to stand up and say how ill I am.
And that is why I have written this (long) piece. I want to be able to stand up and say something about moderate ME/CFS and current treatment and the possibility of improvement because I haven't seen it anywhere else. I've been reading about treatment for ME/CFS for years and only hearing negative things and it put me off asking for help. I understand that I am very very lucky not to suffer as much as some people do, but only hearing about the most severe cases with this competitive air was one of the things making me repress my illness. I have lost count of how many times I've been smacked down or dismissed by people with ME/CFS on Twitter for (small voice) saying 'I can do this' or 'I am one of the 25% of people with this condition who don't have regular pain'. It made me feel like a fraud just as much as the people who cast an eye over you and say 'but you don't look sick...' It made me feel my experiences weren't relevant or important and that I was letting everyone down by seeking treatment they all pooh-pooh. And it depressed me to never ever read anything positive about life with ME/CFS. I needed to hear that there was a glimmer of hope somewhere out there and I hope that someone else who feels the same will find this post and see that there is occasionally some progress for some people.
I've struggled to write this as I don't want to sound like I'm blaming or bullying people who are seriously ill. That is not my aim at all and I know how damn difficult it can be to live with chronic illness. i also know that many people with ME/CFS have horrific traumatising brutalising experiences with medical professionals and that they have every right to speak about those and that their experiences are not the same as mine. I also know that many ME/CFS sufferers feel unfairly maligned by press coverage of the tiny extremist faction who have challenged medical professionals aggressively over the insistence of only treating the mind despite the body being ill and not researching the condition properly and I don't want to feed that fire. But I do feel rejected and unsupported by the majority of the ME/CFS community I have looked towards while seeking help and I think as that's my experience, it's a valid thing to say. I don't expect to get piles of abuse, but I also don't want to upset anyone and I apologise if anyone feels that way.
But I started writing this blog as an account of how i was rebuilding my life from rock bottom and it would be a notable omission not to mention the improvement in my physical capabilities as well as the mental health treatment I have had. Feeling more confident in my physical self has improved my mental state immensely. I've moved away from my hugely unsupportive GP practice to a new friendly and helpful one. I've seen the dietician and identified some food sensitivities and have a gastroenterology appointment for the rest that I've waited 6 years for. I've been able to work two days a week semi-regularly. I've started tackling my eating issues better and feeling better about my body after years of hating and resenting it. I see my friends more. I'm writing elsewhere and getting out more and trying new stuff. I've been able to do my own benefits claim instead of feeling I don't deserve it. I can now tell Lord Freud and co from experience that all the telling yourself you aren't ill in the world does fuck all squared. I'm more confident and feel less separate from society. And I'm not cured. I'm still sick. I'm just currently feeling more able to managed my illness. That doesn't mean I won't relapse or crash in the future. I'm just enjoying the respite while I have it.
Edited to add: this piece explains well why many people with ME/CFS feel angry about medical progress and press representation without tapping into that competitiveness I feel so isolated by.