Warning: This post discuses suicide.
The following guest post was written by Vanessa Ritchie, who after seeing the documentary on Multiple Chemical Sensitivity, on SBS’s, The Feed, has not only written a letter of thanks but has been brave and kind enough to share the personal, heart-wrenching stories of her two friends who have sadly become, yet more casualties in the marginalisation, stigmatisation and traumatisation of the chronically ill, caused by our Australian Government’s inaction on Multiple Chemical Sensitivity. ~ Michellina van Loder
Dear SBS, The Feed and Simon Cunich
Thank you for your very thoughtful, compassionate and respectful coverage of MCS recently. It is encouraging that this illness is finally being brought to the public awareness graciously and with aim to educate and inform the wider community of a very real problem that fragrant products are imposing upon our world. Your piece is an eye opener for all.
And thank you for the time and energy you have devoted to this film, and your choice of subjects to illustrate some of the problems that people with MCS/ fragrance sensitivities face. Thank you for recognising the legitimacy of the illness.
It is appalling that whilst MCS has been known about for decades and is recognised in some countries, Australia lags so far behind. Well done to the SBS for shining a sympathetic light on this issue! I have MCS and write now wanting to share the words of a deceased friend who was diagnosed with MCS around the same time as myself in 2010. She was diagnosed by an allergy specialist in Melbourne.
Her writing speaks of her hope and belief that she would get through this illness, and illustrates an experience that she had whilst incense was being burnt in a church setting.
She sent the following to me whilst she was still able to use her computer.
2010 –
“A few weeks ago, I had to walk out of a Mass service, as they had a different priest and he used incense (I used to LOVE incense used in the Mass, the most beautiful smell in the world), and in front of everyone, I just had to walk out of the church!! It was bizarre, I told myself when he first used the incense, that I would cope, it would be okay, even though my throat started closing over and my chest got tight. Then when he lit a second batch, I did not make the decision to go, I just found myself walking out, I did not even say anything to my friends, it was like my body had taken over, and just to survive, made the decision that my logical mind wouldn’t!! I wonder if you ever find anything like this happening to you?? I wonder if it will happen to me again? The body just wants to survive
She died a year and a half later.
I have not known who to send this to before now, but believe her words have great power and express the sad realities of this illness, that they need to be given to someone who sensitively spreads awareness, and is key in implementing policy change. So I am reaching out to send these heart felt words to you, having viewed your short documentary, and the article published on the SBS website.
I was diagnosed with MCS by a a professor at RPA in Randwick in 2010. He had told me that the illness had been called by many names, “20th Century Syndrome”, “Sick building Syndrome” and “Multiple Chemical Sensitivities” to name a few, and to not go home and search for it on Google—which of course naturally, I did! He’d said there was no treatment, no cure but stressed that I must avoid fragrance.
“Do not use it, do not wear it, do not go near it!”.
This was a message that was totally impossible to me in the world we live in, and with my living in a unit block with shared laundries. My journey of MCS has since forced me from my home on a road of seeking suitable accommodation but ending up now housebound in an unsuitable rental for my condition.
There is a desperate need for crisis accommodation, suitable housing and recognition of the illness. Whilst I was diagnosed by a well respected doctor who has seen many patients with the illness, he sent me away and was reluctant to do anything. He did not really equip me for what was ahead, and I believe I was fortunate that he had honestly given me the diagnosis back then.
He had told me that people move away and live reclusive lives, to which I’d replied that doesn’t suit me, that I want to be part of the community. He knew what was ahead. He was aware of the hardship and disbelief that people experience with this illness, even though he didn’t inform me of such.
That year, I met my two other friends who had also acquired the illness around the same time. A girl from Canberra, who searched for accommodation with me, in our hope to find somewhere more MCS suitable that we could share, and a lady from Melbourne much like myself who lived in a unit block and had a mortgage for ten years.
It was 2012 when both of these people took their own lives due to the continued suffering, isolation and stress of the illness.
My friend from Canberra had become homeless and spent the last months of her life living in her car. She was on a disability benefit and had appealed to Canberra housing commission for housing but there was nothing suitable. She was 32 years old.
My other friend had a construction site for the development of a block of flats commence work right near her unit. She lived on her own and her extreme sensitivities increased and debilitated her very quickly. She lost her living space with nowhere fragrance free to go.
I found the title that you have given to the article on SBS very noteworthy. This is a dialogue that is needed in our society:
While some Australians have chosen to end their own lives rather than live with Multiple Chemical Sensitivity (MCS), Australia’s medical authorities continue to reject calls to recognise the condition as a disease.
SBS TheFeed
Please find below, more of my friend’s words highlighted in quotes.
My friend wrote this to me mid 2010:-
This whole MCS thing is completely daunting. It has left me in daily isolation (I still catch up with friends and family, but for the most part, I am now alone on a daily basis). The worst of it is that it would be bad enough if this was the way it was now to be, but like you, I seem to be getting worse, no matter what I do.There is apparently no cure, just avoidance (don’t even get me started on that)!!! The hardest thing is that it is not very well known, so my GP, although open to it, does not understand it, I do not know what to do to help myself any more than avoiding things, and there always seems to be this spectre of it not being “a real condition” hanging around, and clouding everyone’s judgement.
That’s the whole thing about this, it is not just the physical isolation, because it is not officially “recognised” or a great deal known about it, it becomes a real social isolation as well. I have to say that I refuse to believe there is no hope, and that I will never get better, I just cannot believe that, and I won’t believe it.Still, I wish I knew where to go to get some help, some advice, anything… I have been diagnosed, but my specialist does not seem to be able to do much more than that.
My friend ended her life the day before Good Friday 2012. Two weeks after her 50th birthday. Those around her, closest to her could not recognise the seriousness of MCS and her need for them to be completely fragrance free to accommodate her illness. This is a very sad reality of living with an illness that people do not want to accept.
Unfortunately many in our society will choose fragrance over the quality of life and health of others. Ignorance is understandable when a people or society has not been educated. When there is a health crisis for some that has not even been recognized by the bulk of countries, how can the ignorant be any more accommodating or understanding? And what of those who do have awareness? Those who have knowledge, but dismiss it. Those who can make a difference, even in a small way and yet do nothing?
Thank you SBS for giving air time to this issue.
People with these hidden illnesses are very frequently dismissed and left abandoned by our Government, medical professionals, the work place, friends and family… with an illness like MCS it is often more convenient to look on it as psychological and dismiss it, as opposed to being a real physical problem brought on by fragrance products for example. Thank you to Anne Steinemann, your work is wonderful!
It’s very encouraging that information about these products and their potential hazards are actually being spoken about now, and MCS is being mentioned respectfully. May it come to a point where lives are more important than the fragrance industry’s profits, and these products are regulated.
SBS, The Feed, Simon Cunich, Anne Steinemann, Kate Grenville, Michellina Van Loder and GP Dr Christabelle Yeoh, thank you.
May there be more awareness raised that leads to recognition and positive change for people with this illness.
Steinemann. A, 2018 Research: Prevalence and effects of multiple chemical sensitivities in Australia
Warm regards, Vanessa Ritchie
You can watch the documentary here, on the SBS channel or on YouTube where you can leave a comment or join in the discussion there.
If this post has bought up feelings of depression, sadness or you feel at risk of suicide, please reach out and speak to someone you trust or call Lifeline 131114
NICNAS MCS Report – final report and submissions
http://www.sacfs.asn.au/download/MCS_Final_Report_Nov_2010_PDF.pdf
Alternative download location
The original documents are now unavailable (‘page 404, not found’) on the NICNAS website but thanks to ME/CFS Australia, permanent copies can be downloaded on their website or below:
Crisis Support. Suicide Prevention
Lifeline is a national charity providing all Australians experiencing a personal crisis with access to 24 hour crisis support and suicide prevention services.
We’re committed to empowering Australians to be suicide-safe through connection, compassion and hope.
Our vision is for an Australia free of suicide
131114
This is my experience exactly. If I just had a safe place to live with my animals with safe access to medical when I need it. I approached the Intentional Communities also known as world wide eco villages by phone in 2010 and it took too much energy to get them to understand we need rentals and temporary housing and to respect clean air standards(no wood smoke, incense, eo/chemical laundry fumes etc). If only we had an eco or health group of healthy people to help us.Maybe if the doctors that diagnose us hired social workers to help us with lifestyle needs we would have a head start and not be overwhelmed causing us to consider suicide. I thought this for almost 20 yrs and wrote AAEM and got no response.