Thursday, 24 March 2011

HCV and the Next Taboo..... Shadows beyond Treatment

(this post is dedicated to : Margaretha: Sherry: 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

10 comments:

  1. Eva,
    You summed it up perfectly. I've especially noticed that "feeling better" is certainly not a linear process. some days I feel ok, some days I feel like I'm back on treatment. My biggest worry when I don't feel well is that maybe the virus is back (haven't gotten latest bloods yet)or that maybe this is as good as it's going to get. I've noticed lately that there is little, if any, access to naturopathic or "alternative/non-medical" treatments to those who can't afford to pay cash. I know in my heart that some good bodywork, massage, acupressure and a healthier diet would go a long way in helping not only this post treatment time but throughout the treatment process as well. Think of how much easier treatment would be if you knew you could get a massage even once a week?
    I'm so glad you have opened this Pandora's Box of recovery.
    Jenny

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  2. I found the post treatment journey very harsh especially for the first 6 months, and would say it took me 18 months to recover but even now I have emotional issues that I don't really understand or feel that there's anyone I can really discuss them with. I do, but they're as much in the dark as i am. I'm convinced they are to do with the treatment. And of course we don't want to put people off having the treatment by discussing all these side effects and aftermaths, but the bottom line is that everybody responds differently. I'm so glad I did the treatment as I feel much lighter and more energetic without hep c in my blood, and therefore hope everyone who wants to do the treatment does and can feel better! But I would like there to be more support for "heppers" post treatment, and not just from one another. Aline

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  3. Hi Eva

    I couldn't agree more, this has needed to be brought out in the open myriads back so people can be honestly informed without the predijuce of not being a victim or a whinger. In no way do I think hiding these issue's is healthy to anyone, whether they are contemplating Tx or participating, its far better to know thy enemy then not.

    Well done Eva, very proud indeed.

    John

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  4. Hi Eva,

    Post tx is a hard slog in all honesty I don't think I've ever fully recovered. I found myself stepping further and further away from the Hep C community after tx. I just felt I had nothing to contribute any more and I still have the virus.

    I think you'll find what you're doing here very therapeutic.

    Good Luck with everything

    Ina x

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  5. So, how are you doing now that it's 4 1/2 months post treatment? Did you ever get that 12 or 16 week PCR?
    Since I have no other way of contacting you, please post any news you have here.
    There are times that I think that it takes a week to recover for every week you spend on Hep C treatment. 24 weeks treatment = 24 weeks of recovery, 48 weeks of treatment = 48 weeks of recovery. There are exceptions to that rule of course, but I think that week for week estimate can be used as a rule of thumb.
    All the best,
    MYS

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