In trust we blog

When I first entered this strange new place known as “life after hearing the you have cancer words”, I realise that I had expectations of how life would be playing out from then on.  I vaguely expected that I would go through the treatment, share the emotional turmoil with family, friends and colleagues and then resume some kind of life as it had been “before”.  Needless to say, it hasn’t quite turned out like that.  The basics were there, but life changed beyond recognition.  And life has never been the same since, for better and for not so better.

There has been one dimension of the cancer experience which has been totally unexpected.  And that dimension is the rich, supportive environment I stumbled upon online, particularly through blogging.  I could never have imagined the number of people I have connected with, and particularly the depth of many of those friendships. Now, this is not something new to my posts.  I have previously (and often) discussed how emotionally involved I have become with friends I have connected with online. I have described how taken aback at the level of distress when one of our number is taken. The raw grief of loss, and the unexpected tears on learning that someone you have never “met” has been taken simply crashes through the boundaries we are accustomed to. I have previously, and more than once talked about how much that has surprised me.  I have been moved beyond any imaginable expectations when one of my online friends was dealing with the toughest of times.  So this is not a new topic in my mind, but I continue to be astounded at the warmth and genuine friendship which has developed with friends online and value this more than I can express in words.  Utterly heart-warming.

In the past few weeks, however, I have been nudged to revisit some of these thoughts. I was shocked when reading a post from Nancy where she shared her shock when she learned that another blogger had taken her posts and copied them almost word for word.  This made me reflect on how much we expose ourselves online and lay ourselves open emotionally.  Just because what we write is completely genuine, we take it that all other similar blogs are similarly true.  We generally accept what we read by fellow bloggers and bloggesses at face value in such areas as cancer blogging.  Yet the internet is an unpoliced medium and as far as I am aware, there are no checks to ensure that what is written is true if that is what is implied or stated.

And then, this week I was I was catching up on Chez’s blog when I was stopped in my tracks wen I read her post about “Annie”.  Chez and Anne had connected online, guest posted on each other’s blogs and after some time “Annie” abruptly broke contact.   Given her secondary diagnosis, Chez feared the worst and thanks to social media and perseverance was able to get in touch with one of her friends.  She was shocked beyond belief to discover that “Annie” had in fact fabricated her diagnosis and whole blog.

The point which I come back to again and again in this is the extent to which we trust.  Nancy trusted her readers yet one chose to lift her words, and use them as her own.  Chez trusted that “Annie” was being honest.  Yet we find that this virtual layer of our friendships has the potential to be deceptive.

Essentially, we are trusting strangers, unknown entities, and opening our hearts and minds.  We share our fears, our hopes and intricate details of what we go through in the cancer experience.  Some of this is highly personal, but the supportive environment and strength of friendship reassures us and we feel able to trust.  And then our world is rocked when something we trusted and believed turns out to be smoke and mirrors.  That reflection in the mirror is of the complicated and inter-connected online lives and relationships we develop.  And how much trust we place on the basis of the information in front of us, often because we share so much of our own personal self online.  Something like this knocks that trust.

However, this has to be put in balance with the depth and number of genuine friendships and individuals in our online community.  A good number of bloggers have posted accounts of real-life 3D meet-ups.  The variety of social media we use also means that we have a kind of triangulation which must make it more difficult, but in no way impossible, to be duplicitous.  Perhaps we have a sense of additional false security because we are after all living with our breast cancer diagnoses. But many of the signals that protect us in the “real” world are not there in the virtual world.  We are far more vulnerable and exposed than we realise, and perhaps the very depth of genuine friendship we find online further lulls us into that sense of security.

The whole issue of trust was one which was very much on my mind a few weeks ago when I was making plans to met Terri in “real life”, my first chance to meet another breast cancer bloggess.  I remember thinking that on the rational side, travelling to another city half a day away in another country, was somewhat risky.  Was I being naïve in trusting that Terri was who she said she was?  We had only known each other online.  We read on and commented on each other’s blogs, had connected on Facebook, had emailed a number of times and I felt a true connection and shared values.  But we had not actually spoken.  I remember thinking quite clearly that in terms of a methodically calculated risk analysis, this would have to be considered rash and high risk.

However, although these “rational” questions went through my mind as I booked time off work and tickets, I did not seriously for a moment believe that Terri would be anyone other than who I had met online.  I was sure she would be exactly who she said she was online.  And of course she was!

After reading Chez’s revelation, it did make me stop and reflect on how trusting I am about what I read and how I connect online.  I without doubt take what my blogging friends write at face value and would not think to doubt that some blogs could be invention.  And how should I apply that to my own blog?  Let’s be honest here – my own tales must seem rather far fetched and I do not readily share personal information to corroborate my experience.  I think I have only ever posted one photo of myself and my name appears only in comments.  How credible is my blog?  A Scottish woman, living and working in one of the most enigmatic countries in the world, diagnosed with breast cancer, treated in Thailand, experiencing so much in all corners of Asia……..  Is this for real? If I were reading this myself, would I believe it?  I am not sure that I would!  But here I am, on a sticky pre-monsoonal Saturday morning in Yangon tapping away my thoughts while the fan is whirring overhead, a cheeky mynah bird calling out in a tree in the garden and a street hawker calling out “brooms for sale” as he passes by our hedge, along our lane. Yep, I am real– (pinches self) though in my PJs but don’t tell ;)

I find that when it comes to online trust, it is similar to online loss.  These new dimensions to relationships and interactions do not have rules or protocols.  We do not have the signs and signals we are used to which enable us to process and evaluate online dynamics. And in many cases we find we are not equipped to deal with the depth of emotion we experience in something which may have been experienced entirely in the virtual world.  Witness the incredible #bcsm discussions as one demonstration of online support and emotional connection in its discussions and debates. It is a new and strange territory, and one in which we find a wealth of unexpected characteristics.

The online world may be a fertile environment for duplicity without consequence.  More than ever we need to be aware of that while developing friendships and connections in the blogosphere. In this complex issue of trust in this new and evolving space, on one hand I know I should be wise in developing friendships.  However, I would rather risk and trust than not.  Otherwise I could well miss out on the wonderful connections and friendships that have been brought to me purely thanks to the online world. And I can’t imagine  a world without you!

33 thoughts on “In trust we blog

  1. Absolutely brilliant piece! So much I want to say on this subject – but I am packing for a trip away right now and am tied for time. Will definitely be revisiting this to read again in the future. Thank you for writing it!

    • Thank you so much Marie. I am really interested to hear your thoughts – I hope have a good trip and will be listening out for you re-visiting this.

  2. Phillipa,
    What a lovely piece. We are all navigating this brave new space together; bringing real life and deep experience into a one dimensional forum. Does it work? Yes. Will it help accelerate healing from treatment? Only time will tell.

    Thanks for being such a wonderful voice and force w/in #BCSM. I’m always happy when you’re able to join us.
    jms

    • Thanks J :) It is uncharted territory isn’t it?I am very happy to be in such god company as I find my way. I think it would be a fascinating area to study, to see the effect and perception of this kind of support on recovery.

      I am also very happy to be part of #bcsm, and do feel it is so important to speak out when so many do not have a voice.

  3. Phillipa,

    I love this blog — and I do trust you are real and say who you really are! You point out some excellent issues, that with the blogosphere, it is never 100% a sure thing that someone isn’t going to rip off someone else’s words or fake a diagnosis or something. But trust is all we have if we are going to be writers in the public arena.

    Also, even before the blogosphere, one could meet a person in person, and that individual would turn out not to be the person he/she said he/she was. I met phonies like that in person.

    I guess it’s just the nature of people, some people, to fabricate their lives. Like you, I’d rather trust than not trust. And in your blog, I trust!

    • Thanks Beth! It is absolutely mutual ;) You are right – the blogosphere is an extrapolation of life, but with different rules or rules which either have not been developed or that we don’t know of. People will indeed fabricate, and the internet makes it easier to do so but as you say, it happens in every sphere of interaction.

  4. Hello Lovely,
    What a great piece and I’m so happy you have shared our meet up in Hong Kong as part of the story. I have had nothing but wonderful experiences in my offline meet-ups, so it astounds me to hear about these stories of duplicity. Thank you for talking about an important topic and I can vouch for you. You are real, wonderful, and filled with energy and grace. Big hugs from Peru!
    Terri

    • Terri – thank you, and you can see how significant our meet up in HK has been for me in how often I blog about it! It is also very telling that your own meet ups have been so consistently wonderful. It saddens me as much as anything as I am sure that there are so many reasons for this duplicity and some could be a real call for help.

      I am so very happy that we were able to connect in person and can vouch for each other – I am in awe of you!
      Big warm hugs to you in Peru on your continuing, inspirational adventure! xox

  5. Phillipa,
    There are sick con artists in every corner of the world, so it’s not surprising we find them in our treasured online communities. You’re right that it’s more difficult for us to pickup on nuances and clues online than if we were having a face to face discussion. Regardless, snakes online or in the grass strike, then slither back into their camouflage surroundings, waiting for their next unsuspecting victim. All in all, we’re a loving, authentic and compassionate group, and our friendships are to be treasured.

    XOXOXO,
    Brenda

    • thanks for your comment B – yes that is the thing, there is dishonesty all around us and the internet can be an enabler, coupled with the lack of clues when an interaction is online, as you say.
      And that makes me cherish the amazing friends and the incredible group we have xox

  6. I’m sorry, Phillipa, that this kind of sleaziness has entered our blogosphere. I can’t believe how many snakes slither around cyberspace looking for those upon which they can prey. I appreciate this post because it does alert us to the seedy side of online blogs. Since I was personally betrayed to the core recently, I’m more cynical and untrusting of people than I’ve ever been. But we must take hope! We have a wonderful sisterhood of friends who will stand up for each other no matter the cost. You are one of those friends for me. For that, I’m extremely grateful. xx

    • Oh J – I am so sorry that you have been betrayed and I understand that this would make you very guarded. I am so warmed by our friendship and thankful too for our friendship – thank you for being there for me through thick and thin. xox

  7. I could not agree more, P, with everything you said. There are the understandable naysayers who remark that it shrinks one’s world to spend so much time sitting before one’s computer, involved with social media. But the online world of breast cancer introduced me to this amazing community of such wonderful, generous people, I can only feel that my world has expanded immeasurably.

    Sadly, there have always been con artists & there probably always will be. I remember 30 years ago, one of my neighbors in Boston telling me a story much like the one you related, about a work colleague who pulled a similar, elaborate scam on her coworkers; for months, she had pretended she had a 10-year-old son who was gravely ill. When she suddenly stopped showing up for work, their boss & a few colleagues went to her house, did some digging, & found out the entire thing was a lie. This scam had also involved money raised for this fictitious son. These women were just gobsmacked to learn the truth. Cyberspace has merely provided yet another context for dishonest people to take advantage of others.

    I have been fortunate enough to meet several of my cyber-sisters in real life, and I have yet to be disappointed. This weekend in particular, I fondly recall how one year ago, I met several of them for the first time at the NBCC conference. I treasure that, and continue to marvel at the many layers of connection we all share.

    So glad to have ‘met’ you, too, Philippa! And it would be nothing but a treat to meet you in the real world someday. xoxo, Kathi

    • Thank you for your interesting comment, and wise words and experience. Yes, cycberspace has provided a space, and an easy one at that, for duplicity. I feel that it must also create an opening for some people, where it is less an issue of scamming but perhaps one of complex psychological aspects.

      I love your account meeting up at NBCC and saw your photo – what a wonderful time that must have been.

      I am determined to meet as many of my close online friends as possible – I am sure we can make it happen, K – let’s plan!
      xox

      • Yes, a lot of these scams and betrayals are definitely indicative of some very deep emotional problems. A lot of them, like the story I related, end up making me feel sad more than angry, in the end. You wonder what hole people are trying to fill in their lives by pretending to be someone they’re not.

  8. I found myself quite shocked when I read your very cleverly titled blog. I thought so long and hard before starting my blog. Having a public role and a personal journey has meant I have felt exposed at times and that isn’t easy. Awful to think that some people manipulate that. But like you my instinct is to trust in the good of others. This is a marvellous sisterhood in so many ways, but it is the club none of us wanted to join. I take heart from the inspiration of others, thanks for your own brand of wisdom and eloquence.

    • How interesting to hear form your perspective, A – such a fine balance you have to find.

      Yes, I am sure that our instincts can guide us and also for the tiny number of encounters that are not genuine, we have a wealth of true warmth and friendship in this sisterhood.

      Thank you

  9. Hi Philippa, I’m still at the stage where I think I’ll get through the treatment and go back to my ‘normal’ life. Not so?
    Hazel

    • Oh Hazel – I had no idea – I am sending you a message…

      In many ways, you do get through treatment and pick up again. I am still in Asia, still working in development and still loving it! Many changes in my life due to cancer are in fact for the better – being much more proactive about work life balance, taking advantage of things which might otherwise slip by, and making choices which are good for me. I personally find that my perspective on life has changed though in a sense, but that manifests itself as vigilance.

      You will see from this discussion, that there is also a heap of support and friendship from the least expected sources. And seriously wicked humour!

      Big, big hugs to you from Yangon and please keep in touch, P xoxoxoxox

  10. Very good blog and discussion. As for me, I would rather be the one scammed than the twisted soul who finds it necessary to fool me or steal from me.

    And by the way, I saw the word “gobsmacked” for the second time today. What does it mean? And how did it originate? I have never heard it before today. Shows how little I know.

    • Thank you so much for your comment and your wise words – I absolutely agree, and would rather be the deceived, or scamee than deceiver or scammer. But it is easy for me to say that in a position of what I guess is relative comfort. Very sad.

      I LOVE your question about “gobsmacked”!! I know it is used a lot in the UK (especially in the north east of England and in Scotland particularly) and is a colloquialism for being totally astounded or shocked, kind of stunned into silence. The beautifully eloquent term “gob” is a crass word for “mouth” – “shut yer gob” is a particularly delightful expression to request someone to be quiet! I think that “gobsmacked” conveys the sense of being so taken aback and shocked at something that it feels like a physical blow.

      Working in the field that I do, I have a kind of “mantra” which I try to live by as well as relentlessly reminding those around me – “you learn something new every day”. I love the fact that today’s learning is about “gobsmacked”! Thank you so much – I love your blog, and am I love your comment here.

      • Hah! I use “gobsmacked” at least daily. You can take the girl out of Ireland but not Ireland out of the girl . . .

      • Thanks! What a great word! Do you suppose a “girl” of 81, German ancestry, fourth generation born in the USA, married to a second generation Norwegian born in the USA, can adopt it?!

      • I love this conversation! I would be delighted to hear how you use “gobsmacked” L, and if you need inspiration it sounds as if Y can provide plenty of examples or usage :) Am having visions of a serious “gobsmacked” blog discussion, or maybe even its own facebook page ;)

  11. Great post, P. I got sucked in with a cancer faker early on. It was devastating. I did develop better BS detection mechanisms as a result.

    Also I have made a decision to keep my bl

  12. Blog ad-free. I won’t endorse products treatments or organizations without serious legwork. I say that as a blogger my only asset is my integrity and the trust I build with my readers.

    • Thanks CB – and I am sorry to hear that you were taken in too, sad that we need to develop these mechanisms. You are so right about integrity – and yours shines through. Hugs across the miles xox

  13. Philippa,
    This is such a wisely written post. But then, your words are always so thoughtful and wise. As you mentioned, I was astonished when I discovered my words had been so blatantly stolen. (I was equally astonished when a few online friends swooped into action and took care of things for me). Maybe I was naive to be so surprised. We do tend to be quite trusting don’t we? Perhaps being so trusting does add to our fragility. I don’t know. I do know, without a doubt, the risks of trusting are far out-weighed by the wonderful connections I’ve made that are very real. I wouldn’t trade them for anything. I value friendships such as yours more than I can express. Thanks so much for writing this post.

    • Thanks N, and thank you for the role you played in setting me thinking on this. How interesting that such support was garnered instantly! The theme which is clear through all these comments is of the benefits far outweighing the risks. And what wonderful warming benefits we get. Thank you for your unwavering support :)

  14. This is such a fascinating post, Phillippa. I’m struck by Nancy’s use of the word ‘naive’ – I felt this way after reading your post, as I guess I had assumed on some level (without giving conscious thought to it) that plagiarism/fakery would be unlikely in the cancer ‘space’, for want of a better term. So sad to discover this is wrong. Like so many others, though, I guess it seems to me that the benefits of getting involved in lovely online communities such as this outweigh the downsides. Kind of reminds me of when I was a phone crisis line counsellor – accepting that fake/crank/sex calls would inevitably be a part of the experience but trying to focus on the really valuable calls that made it all worthwhile. I am happy to show my armpit scar in a blog pic if that helps establish my bond fides (think the reconstruction might be a bit much for my family and friends!!).

    The issue of meeting up with people you’ve met online is an interesting one – I’m sort of facing this in reverse, trying to decide whether to let the Darwin breast nurse (who loves emailing links/info around to her ‘ladies’) know about my blog. I am starting to meet some of these women in real life, at a ‘normal’ kind of pace…I feel weirdly shy about putting the blog out there, as they will then ‘know’ me much quicker than I ‘know’ them (does that make sense??). On the other hand, it could be a really good thing to do in terms of making ‘real life’ connections in a place where I could really use them. The net brings up so many issues!!

    • Thank you for your thoughtful comment, L – I had to giggle at the thought of us all baring scars and other signs of our treatments as a “password”!

      It is also very interesting to hear what you say about sharing your blog with women in your locality. Yes, it does create a kind of uneven balance. I understand your shyness. I absolutely agree that the internet brings so much but we are having to run to catch up with how we handle these new aspects of connecting. Fascinating.

  15. Hi & sorry it’s taken me so long to post a comment about this post!
    I was pretty devastated when I realised that I’d been conned by ‘Annie’, especially since I’d invited her to my precious daughters 4th birthday party – and she actually attended!! My family & friends knew how much she’d ‘touched my life’ & ALL OF US were shocked to the core to find out it was all a hoax. I think at first I just felt like an idiot but I quickly came to feel worried instead. Worried because I’d driven a lot of traffic to ‘Annies’ blog. I’m a pretty strong person but I’m regularly contacted privately by people who are going through their BC treatment & aren’t as strong as me; I worried about the effect that it would have on them which is why I kept it to myself for so long. Thankfully, people were so understanding & their compassion for Annie touched me too – everyone thought she needed to get some help & I sincerely hope she has done.
    It did make me a little wary of other bloggers for a while, I follow lots of different blogs but in the end, I decided that the ‘good’ people outweighed the ‘bad’ & I have made many lasting friendships through this online community, it would be such a shame if my experience with one, obviously sick in another way, kind of person put me off blogging completely & I no longer connected with the people that support me, make me laugh, make me cry & – more than anything else – UNDERSTAND what it’s like to have this awful disease hanging over you.
    I love this blog post, thank you for writing it, I always read your posts & I’m honoured that you read mine actually.
    With a lorra lorra love from me in Liverpool :) I’m sending hugs & healing thoughts all the way to Yangon. Chez. xx

  16. Pingback: In praise of my fish pickling flair | Feisty Blue Gecko – a tail of the unexpected

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