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Disclosure #1

14 October 2015

One of the reasons I applied to be one of the “Uninterrupted” blogging team was that it was explicitly stated in the call for participants that we could choose to be anonymous.  I love to write and have been thinking about sharing my experience of living with MS for quite some time – but the whole issue of not being “out” to my patients has stopped me from doing so.  Until now.  It’s an important issue to me, too.  When I look at MS-related blogs and other online sources of support, it sometimes feels as if there’s a lack of information out there from those of us who live with essentially invisible disease.  This makes sense – all those who have the option of keeping their MS hidden, as I do, face the same dilemma of whether or not we might come to regret it if we open ourselves up on line. 

Will future employers read what we write before they interview us?  Will clients find out more about our personal life than is appropriate? Will people who know me be hurt if they learn about my MS on line? Do I want a prospective partner to know I have MS even before the first date?

So perhaps it’s not all that surprising that there seem to be relatively few blogs and so forth from people with MS whose disease is not obvious to those around them – even though there are a lot of us out there. For those who seek personal stories about living with MS on line, and particularly those who are newly diagnosed, I want to contribute to providing a balanced view of the different ways MS can affect different people over time.

When MS Australia first told us that we had been chosen to blog for the year, the “regulars” got together via a webinar and had some instruction on how to use the platform and various aspects of blogging.  It was good to realise there are a range of experiences of MS among us – the duration and nature of our illness so far is all different, as are our backgrounds.  Excellent!  But before we’d even posted our first offerings, those of us who have chosen not to use our real names were encouraged to rethink that decision. We were told people relate to / engage with / identify with bloggers so much better if they see them as a “real” person.

Initially I was hurt and disappointed by this.  I thought I’d been quite clear with the entry I sent in that I couldn’t be part of this project if it meant being completely open about myself.  I’d love to be that open – but I have a responsibility to my patients and it would cause some of them great distress if they read this blog and realised it was me.  The discussion about the advantages of full disclosure made me think again about what I was signing up to do and whether I could do it well as “The Unaffected One”.

Since then, I’ve posted 14 blogs and had uniformly positive feedback from people who have visited the site (thank you!).  At last count, the Twitter version of my persona had 275 followers and has become “friends” with several of them.  From my side, I feel very much engaged with the audience here, despite the fact I have set limits on how much of myself I share.  In some ways, I am perhaps more open about some things, just because there’s a degree of anonymity freeing me up.  I’ve certainly never told anyone the story about my worst ever tram ride before – but I enjoyed sharing it here, knowing many of you would understand.

Anyway – this has been a rather long winded way of saying a few things.  Most importantly, THANK YOU to all of you who have embraced The Unaffected One, despite the lack of a face or name!  I really enjoy interacting with you on line.  Secondly – there are a lot of us out there with “invisible” MS.  Most of us are not unaffected – but if you are recently diagnosed and wondering what the future may hold, there’s a lot more to living with MS than walking aids, and not all of it is terrible!  I’m hoping we’ll have some guest blogs soon from people who use wheelchairs, or face other challenges not represented among the regular team, so you can also read about how they get through the day. I’ve mentioned some of the lovely friends I’ve made who lead meaningful lives despite substantially impaired mobility – I’ll see what I can do to get some of them to tell their stories here!

 

The Unaffected One

Facebook: www.facebook.com/unaffectedone

Twitter: https://twitter.com/theunaffected1

 

 

Comments (7)

Well said TUO- thank you. As someone else who is blogging under a different name, I've also been heartened by the positive response to my posts, and it really has been a non-issue once the blogging started. I do agree that it would be great to have more diversity amongst the bloggers though, so hopefully your post sparks some interest within the community to get some guest blogs happening!

There should never be pressure from anyone in regards to disclosure, it is an individuals response to their individual situation. You are telling your story and creating awareness, the message gets out there, because with blogs the reader nows there is a real person, telling a real story. Whether you call yourself Joe, Harry, or Cynthia. It is still your story. :-)

Thanks Amber. I completely agree that disclosure (particularly when it comes to health information, which is quite an intimate topic) should always be an individual choice. My second blog on this topic is all about my views on when and why it's "right" for me to share my MS diagnosis........probably not the next thing I'll post, but you'll definitely be seeing more from me on this topic over time! I'd be really interested in how people with more visible MS symptoms feel about whether or not they routinely explain their diagnosis to people? Must be such a different decision in such circumstances!

Thanks Sam - I'm glad you've also found the community out there interested in blogs about MS is a lovely one. Aren't the Twitter folk nice? I get quite a bit of positive feedback in that sphere, and it's lovely to hear from people around Australia and even overseas who are looking at this platform. In terms of diversity - I have been speaking with some of my "real world" MS friends and I think at least one lovely person who is a wheelchair user with MS will be writing something soon. Fingers crossed!