The last taboo?

visualdiaryblogpost

Last year, or maybe it was the year before, I decided to fine tune my blog a bit.  Never really quite sure how to define it except for being a place that was mine, I thought I should take a more focused approach and only post about design related things.  Which is probably why I haven’t blogged since.  Well, that and the fact that I discovered Instagram.  Not that I don’t love design, and decorating and all things related to interiors, especially if they’re pink or turquoise, but I’m just not very good at compartmentalising.  And now that I remember, one of the reasons I started blogging was to share the joy of the everyday, but also to share the joy that could be found (or not) living a less than perfect life.  In my case, that’s a life with Chronic Fatigue Syndrome.  I wanted to, and felt a responsibility, to occasionally talk about an illness that some people don’t even admit to having.  I know, can you imagine?

While recently watching the excellent Ruby Wax document about mental illness on the ABC,   I was struck by Wax’s comment about mental illness being the last taboo – or something to that effect.  Not so: there’s another and it’s ME/CFS.  And it causes unbearable hardship and pain for the estimated 200,000 people in Australia who have the disease, as well as for those who support them.

From my own experience over the last twelve years and what I read about others, those (of us) with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) here in Australia not only suffer the huge range of debilitating effects of the illness and the loss of a ‘life’, but experience stigma, ignorance, neglect, and disrespect, typified by lack of awareness, support and understanding in the community – from friends and family to medical practitioners.  And this is hard to bear.

A few days ago I got really excited about a documentary I discovered, called The Blue Ribbon, being made by an American journalist Ryan Prior, who also lives with ME/CFS.  The promo is available on line and I weep as I watch it again and again.  Because it gives validation and hope. Prior explains that the overwhelming response to an article he wrote about his experience and thoughts on the illness, the ‘untapped reservoir of pain’ triggered his obligation to do something about this situation because he could. The promo is available at: http://www.youtube.com/watch?v=VSLHT88o0IQ

In 2002, the Royal Australasian College of Physicians (RACP) attributed the prevalence of ME/CFS between 0.2% and 0.7% of the Australian population (RACP, 2002) which is more than 180,000 people. The Centers for Disease Control (CDC) in Atlanta says there are 1 million victims in the United States and 17 million worldwide – See more at: http://www.com/2013/06/a-young-man-a-big-disease-and-a-big-idea/#sthash.La4zWhrC.dpuf and also at http://www.cdc.gov/cfs/general/index.html

For those who would like to know more, and particularly for those who have strong opinions but don’t know the facts, check out the ME/CFS Australia site, http://www.mecfs.org.au/what-is-meorcfs

If this promo lives up to its promise I am hopeful the documentary could change the lives of many people, if only through greater awareness and empathy (not to mention increased funding and research). However if the lack of response to my request on my Facebook page to watch the promo is any indication, then maybe I shouldn’t hold out too much hope.

 

  • Yvette Wilson

    What a lovely blog you have here. You should post more, you are really good at it. I am now going to look through your blog roll, just getting a cup of tea first…
    Yvette
    x

  • http://homelealass.com Lynda @HomeleaLass

    I want to applaud you for writing about ME/CFS, it is a silent illness that is hard for people to understand. I struggle daily with unrelenting fatigue, and have been diagnosed with Orthostatic Hypotension. Fatigue was the reason I started blogging at http://www.homelealass.com – it was something I could do when there was a lot of things I couldn’t. I haven’t found a way to write about my illness that I’m comfortable with, a way that an ordinary person would understand what I’m going through without thinking it’s all in my head. Hopefully one day I will.

    I’m looking forward to reading your blog more, both about ME and interiors.

    Cheers,
    Lynda.

  • http://www.newfarmfoodstories.com Jenny Menzies

    Hi Jenny,

    Good to see you blogging again and on an issue which has such a major impact on so many people’s life. I watched the promo and it looks like a great doco. I wonder how much money on medical research into CFS is spent in Australia?

    Jenny

  • Karin Cutler

    Such a horrible illness, I really feel for you. I’m reading this at 2am (insomnia) and I have clicked on all your links. Here’s to more research, validation and hope.

  • http://www.mypinkdoor.com.au/ Jenny

    @Yvette – Thank you very much Yvette, yes a cup of tea is essential!

    @Lynda – I’m sorry to hear about your struggle Lynda, and do hope you find a way to talk about it someday. No guarantee everyone will get it, but that’s their problem. Easy to say I know, but this is what I’m telling myself too :) . I know, me too! re blogging. Maybe many of us who blog do have health problems, we do it because we can? I’m glad you appreciate my post, thank you xxx

    @Jenny – Surprised to find my self here! good question re funding …

    @Karin – You are always so kind Karin. I’m one of the lucky ones. So many people with this illness (and others) are so much worse off than me. I only talk about things things to help the cause. I hope your insomnia improves … I suppose you’ve tried herbal tea, guided mediation CDs, getting your husband to massage your feet? xxx