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herry skank jenny and all post treatment one of a series of post on hep c post treatment recovery i write this article for all those reaching the end of the many months of a gruelling treatment to combat hepatitis c and those just finished in the last few weeks but if any of the themes are relevant and helpful to those recovering from treatment for other conditions please share with them the link for this blog and please engage in discussion and shared experience both here via comments and amongst your own networks why taboo i am not talking about the more general problem of disclosure of hcv status so i won t say much here about the stigmas of actually having hepatitis c for most patients even if not directly in the firing line of it the reality of stigma for some is surely at leastfamiliar there is some debate refuting that stigma exists mostly from those such as myself fortunate enough to be in a personal circle of support or environment where there is little judgement or serious consequences of disclosure but it s is a real problem for many i know from personal stories of others can t tell family boss collegaues neighbours about the nasty disease this of course adds to the struggle and isolation and difficulties asking for support both practical and moral well many including myself have written about this elsewhere and hopefully will continue to do so here i want to talk about a very subtle taboo which shadows both our relationship with others in our lives who don t have hep c and even sometimes with other hep c patients it really gets tough when hep c patients feel confused or discoouraged as to how or whether to talk about more raw and ugly issues even amongst other patients please don t all yell at me at once and insist the hep c support community both on line and in real time support groups is a conclave of angels and that we can always talk about things totally openly sure we learn to have tremendous compassion and insight in sharing a way through this stubborn and often horribly cruel disease but we have our achilles heels and learning curves too the discomfort of others speaking openly and uncomfortably and raising themes that are scary too intense too negative is at times another obstacle to be negotiated even amongst patients maybe to describe taboo seems a bit over stated i don t think so though i felt terribly uncomfortable trying to talk about my experience of post treatment realities there was often a real awkwardness or uncomfortable silence or defensive or corrective responses from others people don t want others to shed doubt on the overall choice to treat or don t want to hear concerns and struggles which they themselves may be trying to push out of their own minds a taboo can be an absolute social injunction against a particular theme or behaviour but it can also be more subtle here s one definition taboo a ban or an inhibition resulting from social custom or emotional aversion i certainly felt the inhibition the emotional aversion and have been told by others that they did too i think this is actually quite powerful and potentially quite damaging as those who remain very isolated after the meds have stopped but are still incapacitated and struggling can experience this as a very bleak time and there is then the additional isolation of being not only physically isolated but also locked into a kind of silence and disconnection not great for feeling healthy whole and confidently positive well the only way to make it more possible to talk about certain themes is to talk about them so what i want to touch on here is how different the experience of recovery beyond treatment can be for different patients how for some it can be another phase of struggle and symptoms in the road beack towards recovery so don t read on if you want simple reassurance without the harsher realities of those times when it doesn t happen quickly or smoothly but do read on if you want what i hope will be a realistic and balanced picture how difficult it can be for many hep c patients to discuss describe and share their post treatment recovery issues openly clearly and honestly even sometimes with other hep c patients including those who are themselves post treatment please let me say and be heard really clearly that no judgement is implied of anyone in raising this those who do speak out or chose not to or are not sure how to and those who have genuine concerns about what gets described and how were someone to deliberately obfuscate the realities for agendas of their own not helpful to patients then that would be disappointing and wrong and perhaps that does sometimes happen the problem of deliberately obscuring the reality does exist as many have quietly or loudly told me following my own choice to write about it from my experience but on the whole it seems to me that the confusion and anxiety about a straightforward discussion among patients and between patients and health care practitioners has its roots in a number of factors patients who are post treatment don t want to discourage those who are considering starting treatment or are on treatment because if they don t treat then what there aren t a great deal of options in combating hep c and it can be a serious disease conventional combination therapy can be for some a heavy duty and gruelling treatment for others it will be less severe and for a few some 20 not too bad but when it is bad it is very very bad how does a person make a choice to willingly step into such a treatment programme for 24 or perhaps 48 weeks or more if there are problems if everyone is saying it doesn t get much better for another x number of weeks once you are done we want to encourage each other to fight the disease and we want to be honest but how the heal do you get the balance in the words of the song do you want the truth or something beautiful treatment can be ugly recovery ain t pretty how to describe the varied range of reactions difficulty in ourselves in acknowledging the reallity of recovery and awkwardness around causing discomfort to others we held out through treatment by telling ourselves how much better it was going to be when it stopped relief as soon as possible please like yesterday when we hit eot end of treatment it can be hard to admit even to ourselves that for a period of time we feel no better worse tiny signs of recovery but screamingly frustratingly tiny we don t even what we feel like so we tell ourselves yes i am feeling better no i don t think i am round and round in our heads till we have no idea then someone else asks how are you and no wonder we don t know what to say far easier to say politely yes ok getting there thank you i didn t do much of that myself being the awkward say it like it is type but i did do it a few times when i was very tired and a bloody lonely feeling it is too conditioning we have been told so often by others how much better we will soon feel and we are also unconsciously aware of covert social expectations to pull up get it together now and get on with life this is not necessarily malevolent or deliberately cruel from anyone it s just steeped in our cultural attitudes to illness positive attitudes needing and wanting solutions and to fix that which is broken and other people s and everyone s fear of sickness and damage and vulnerability so we encounter in ourselves as well as others a subtle background attitude ok you ve had you long and severe run of being ill and unable to function now you re done no more meds have a rest for a few days and then get back on the conveyor belt sounds brutal but it s out there actually i said subtle but it s not always that subtle even in the way we can do it to ourselves i think also we fear that we are miserable depressing other people seen as inadequate or failures in our own eyes or others for not being tougher and overcoming symptoms through sheer positive thinking and willpower this is where i think that misconceptions about positive thinking and mind body healing and a strong attitude can get distorted and be harmful issues around images of strength and weakness heroic survivorws and thrivers etc we don t want to tell even other post treatment patients or our own doctors that we are still weak ill sore struggling and minds and emotions still disrupted what is they re recovering better than me i don t want to know i am doing better than them i will scare them my doctor thinks i am neurotic my boss thinks i am a slacker and so on and on and on we feel inadequate failure to recover promptly and more robustly is in our minds subtly somehow a personal weakness and letting the side down we really need to bring this one to the light for healing i believe it is very undermining and insiduous imperfect and awkward as it is this is my intial thoughts on how to start clarifying and describing and sharing what is really the post treatment experience and journey for hep c patients it is part one of three articles i am writing each with a different theme and i do invite you to comment to exchange messages with me to share your experiences with other patients and maybe take a few small risks or bigger ones if you feel able and to begin to talk more frankly with your health care practitioners that leads me to mention the theme for a further discussion and then to close for now in the second part of this series on post tx i want to discuss issues relating to discussion of recovery with consultants nurses and other medics and fears and anxieties surrounding that as well as same within friends family and at work how to wisely handle apparent cnflicts real or imagined within hep c circles between telling harsh truths and softening it enough to not frighten the last drops of courage out of sick and tired patients also the next and final post in this series will focus on more practical tangible and or solution drive themes ie patterns of recovery and regression post treatment and different phases where to go for best health care and nutritional advice networking with other patients especially post treatment invited shared experiences and descriptioons and collation of different symptoms recovery signs time periods for real improvement etc thanks and please note this article is a work in progress not a finished piece so i hope it will come a collaborative one and i will continue to adapt and edit it as other give input and suggestions i don t suggest i am right or wrong about any of it it is new terriotry for me i am not long pas fnishing a very heavy duty treatment and am finding my forward blind folded on the whole i certainly was mainly told that i would be and feel a lot better and much quicker than has been the case for me that has been shocking and frightening my intention here is entirely positive to generate real insight and health and healing and to inform both patients and practitioners eva day xx note please contact me if you have experiences to contribute re post treatment for the next post in this series this may be anonymous or by name as you prefer note for those networking mainly from home via internet community there is a post on my blog everyday adventures in creative living which might be relative it looks at on line relating and social networking positive and more negative aspects post is called what to write on people s walls http eva everydayadventures blogspot com the blog has a focus of recovery from life challenges including illness generally and on positive choices for community and creative living so there may be other articles there of interest to hcv patients wishing you all good health and good living eva day posted by eva in cloud kooky land at 06 02 12 comments labels hcv post tx recovery stigma saturday 19 march 2011 absent on the sofa hepatitis c and brain fog the normal neurological pathways are malfunctioning so please do not expect sense or comprehension the treatment i ve been on has a mangled brain effect i am the hep c patient who wanders how some system and a competent ability can be possible in managing any personal admin with no focus or brain agility uncooperatively the clock and calendar i consult show hours weeks months days which blur and fiendishly rearrange themselves confounded by my mental haze i used to be quite capable and a practical type of person who d make to do lists if i try that now they read like obscure abstract poetry but the efficient world insists that bills are paid cars are taxed and hospital appointments are regularly attended i m phased by tasks and just can t draw on personal resources on which i once depended gone is the once reassuring background confidence that i can tackle any basic chore if i have to call a help line please explain carefully again and speak slowly i implore but the person at the other end speaks just as fast but louder like a typical foreigner abroad i can t grasp what is explained or join the dots my once neat information processing is flawed incidentally when i earlier mentioned motor vehicle tax i should add i certainly ain t driving i need my fog and hazard lights on even as a pedestrian there is not a chance of my surviving complicated and overloaded activities like gears indicators or mirror signal and maneuvre even in my own home most days i struggle to use the tv remote control or operate the hoover and yes it bothers people when they re telling me something that seems not so very complicated and i stare blankly am unable to reply ask irrelevant questions and perhaps get strangely agitated all this might seem very paradoxical because some say i often write with insight and some clarity so how is it cannot get my head around the abcs of basic tasks there is certainly much disparity between small remote islands of imagination or and good sequential thought or ability to follow an apparently simple everyday discussion or procedure it s because of all the pills i had to swallow those heavy duty medications i ve been taking for so long have made me confused and scattered yes i do still have some brain cells but not in good working order scrambled tired and battered and although i write this with good cheer and a light hearted tone not sounding too distressed please understand the battle and that i am painfully aware of how my competence has regressed for in this rhyming story i want to let you know that there is sadness loss and disconcerting fear that in exhaustion and befuddlement my previous abilities and skills may permanently disappear i have to work each day to encourage my own thinking functions often push past shutting down and i need you to be patient understand this sad happy distracted hopeful moron in a dressing gown eva day posted by eva in cloud kooky land at 01 47 4 comments labels confusion hep c and brain fog tuesday 8 march 2011 3 months post treatment expectations and realities this blog is the record of my journey told alongside the experiences of others through a damned harsh treatment once i got to the en...