There have been several articles in the news lately about the experiences of people who have been forced to endure quarantine or social isolation due to the coronavirus.
Many other people are worried about having to stay at home for a couple of weeks, without access to their regular activities, because they have never had to think about what it’s like, but some of us (indeed millions around the world) have been forced to stay confined and isolated, sometimes for most of our lives! Our stories are seldom told, and when they are told, they’re often dismissed as anomalies and quickly forgotten.
When I saw the following articles, I felt the need to add a different perspective.
CBC – February 9, 2020:
‘Walls closing in’: Surviving quarantine on a luxury cruise ship
Long-term effects can include nightmares and flashbacks, expert says
…”We’re not in jail, but it sort of feels like it,” Clement said from inside her suite.
(See here and here and here and here and here for “sensitivity” imprisonment)
“My husband and I are starting to feel the walls closing in.”
This is the Diamond Princess, a luxury ship, now a massive floating quarantine site, where passengers will remain confined to their rooms for two weeks.”…
(If they had severe MCS/ES, they’d be housebound for years, perhaps the rest of their lives, and far too often somewhere that doesn’t feel like a home because it isn’t safe to live in due to exposures from building materials, neighbours, or other factors that make it unsafe, and there are no vacations from this life)
…”Mentally you think you’ve got it [together]. Then you call home and you lose it. You talk to the grandkids or children and it just hits you that we’re not free to come and go.” …
(Many people with MCS/ES are unable to see family, see grandchildren grow up, or visit with friends, for years, or forever, because almost everyone in society uses products or materials that can cause serious adverse health effects)
…”If you’re quarantined at home, you don’t have to worry about contagion from other people,” he said.” …
(With MCS/ES, even at home you are subjected to exposures from neighbours and others that you have no control over – pesticides, laundry products, diesel fumes, air “fresheners”, colognes and cleaning products, business or manufacturing emissions, contaminated packaging on deliveries, etc. Those fumes do not respect property lines)
…”Canadian officials have said mental health services will be provided to those who were airlifted from the key outbreak zone of Wuhan, China, now quarantined at CFB Trenton in Ontario.
(Wonderful! This is another service that is seldom available to people who develop more severe MCS/ES as the profession remains inaccessible and/or unfamiliar, and cannot offer helpful or relevant assistance)
Health Minister Patty Hajdu has said the evacuees experienced a “tremendous amount of stress,” anxiety and boredom during the lockdown in Wuhan. Many have been separated from their children or had to leave loved ones behind.
And while social interaction will be limited on the military base, officials are taking steps to keep people occupied, including setting up play centres for kids.” …
(It’s very good that these people are being helped, and provided with services, instead of abandoned to fend for themselves like people with MCS/ES and other environmental disabilities are, but why the discrepancy of care?)
…”Room cleaning and laundry service has ceased, with few supplies available to passengers, says Clement, who has been washing her clothes in the sink.” …
(People with MCS/ES cannot use shared laundry machines, or find cleaning services that don’t use toxic products or have people who aren’t contaminated with toxic products… Some of us have been without vacuum cleaners or laundry machines for years, as new machines emit toxic fumes too)
…”For now, Clement is trying to remain positive, and reminding herself that she’s one of the lucky ones. Not everyone on board has access to a balcony — some don’t even have a window.” …
(Many people with MCS/ES can’t go outside or open windows or get a/c in the summer, or if they do, they have to run inside and close windows without a moment’s notice, because of the above mentioned product fumes (and others) which can cause disabling, debilitating, chronic symptoms when exposures are more than momentary, and even the momentary ones can cause hours or days of pain or other effects)
For most of the people affected by the coronavirus quarantines, their situation is temporary… For those of us with MCS/ES, it’s often permanent due to the systemic accessibility barriers faced when trying to access any kind of appropriate care and basic needs…
Why the discrepancy of care?
CBC – Mar 06, 2020:
“But that time in isolation is coming to an end. According to local health officials, those who’ve spent the past two weeks under medical observation in the eastern Ontario city will finally be cleared this morning to head home.
…
Clement spent two weeks stuck on board the Diamond Princess — a “luxury prison,” as she previously described it — before boarding a plane chartered by the Canadian government.
…
By the time she leaves today, Clement said, she’ll have spent the past 30 days under some form of quarantine.
“That’s a long time to not have your freedom … to choose what you want to do or where you want to go,” she said.
“I find myself wanting to sleep a lot of it, just to make the time go fast. I keep busy with walking. I’m a walker so I listen to my music and walk the hallways when the weather’s bad outside.”
…
(I’ve been almost entirely housebound since around 2006, and except for a handful of times leaving the property, totally housebound with only a few minutes a day outside since 2011. I walk around my table to get a bit of exercise. I long to be able to spend time outside, to be among family and friends, to access basic services for dental and health care, to be able to find food, clothing, and appliances that don’t cause adverse effects, and to be able to exist without severe symptoms from products and materials that don’t need to be the way they are, and shouldn’t be allowed everywhere the way they are)
…
CBC – Mar 08, 2020:
‘It’s really good to be home’: Ontario couple return after weeks under quarantine on cruise ship
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Yerex and her husband Greg were among the 700 people who contracted the novel coronavirus aboard the ship.
She remembers being confined to their cabin, only seeing other humans when the crew delivered meals.
“The staff were wearing masks. So they would knock on the door. We would all be wearing masks. We’d open the door, they’d hand us our meals, and we’d shut the door,” she recalled.
(How I’d love to be able to order food and have it delivered when I am too sick or fatigued to prepare something, but with numerous food allergies and sensitivities, and pervasive fragrance contamination, it just isn’t possible.)
She was grateful for her outside cabin that had windows and a balcony, allowing the couple to get a little bit of sunshine and fresh air.
…
One stint of quarantine was clearly enough for both her and her husband.
“It’s a real test of a relationship, lemme tell you,” she said.”
…
(A few weeks together in an unfamiliar or restricted environment can be rough on any relationship, and most relationships don’t last long when one of the partners develops MCS/ES, as the changes required are seen as burdensome, or bring home too many contamination exposures from being out in the world)
CBC – Mar 09, 2020:
Councillor Josh Matlow in isolation after contact with person who tested positive for COVID-19
… Matlow, who represents Ward 19, Toronto-St. Paul’s, announced Monday he will be in self-isolation until March 20. Dr. Eileen de Villa, Toronto’s medical officer of health, advised him to make the move, he added.
Self-isolation means staying indoors and avoiding contact with other people for 14 days.
Currently, Matlow said he is “fully isolated” from his wife and daughter. He says he has created a living space for himself in his home’s basement, where he is sleeping, and he is not eating meals with his family.
“Honestly, I’m going to have to figure it out,” Matlow said on Monday in an interview with CBC Radio’s Here and Now.
“I’m trying to set up a scenario where I can function, I can be isolated, I can be helpful and also do my work,” he said.
“I’m not going to be everywhere I would prefer to be. Meanwhile, I am going to do everything I can as an active councillor, as I normally would do, just within a very confined space. Thank goodness I have an operating phone. Ultimately… it’s a very surreal scenario to be in.” …
(Some of us shared thoughts and human rights resources with him on his fb page, asking him to be an ally when he comes out of quarantine, as his isolation is only temporary, and for some of us, it’s permanent due to the systemic accessibility barriers that he, as a City Councillor, as the ability to do something about.
Guess what happened?
Did he or his staff engage with us? No, they deleted our comments and blocked us from commenting on the page again!
The post Dear Quarantined and Socially Distanced is a much longer version of a comment that was posted on his page, but without any links)
My comment on the NPR article below:
Personal Essay: Coronavirus Lockdown Is A ‘Living Hell’
The closing line there is the zinger.
So much of the experience of the person in the article is just like another day in the life of someone with more severe MCS/ES… except the people in China still have more freedom, they can still have human contact, they can still eat, drink, and wear what is available, things people with MCS/ES dream about doing.
In this essay, a young person in the city where the new coronavirus was first discovered reflects on how China’s response has forever changed her:
As residents of Wuhan, China, my family and I are living in hell.
The city has been locked down for more than a month. Every night before falling asleep I have been confronted by an unreal feeling and many questions:
I know that coronavirus is the reason for the lockdown — but did life in Wuhan have to become a living hell?”
…
When someone says we can accomplish something but we must pay a price, do not rush to applaud.
One day you may become the price that is paid.
There is a saying in Chinese that has taken on new meaning in this coronavirus era:
“When the stick hits my own head, I finally understand the pain — and why some others once cried out of pain.”
…
…
Please share your stories now!
The world might finally be able to relate to just a little bit of what it’s like, and maybe more will even be willing to make the efforts to stop using the things that force us into isolation, so that we too will be able to leave quarantine.
The world needs our voices and wisdom!
Seriously "Sensitive" to Pollution 
More media, this time from the perspective of many people with disabilities (and there are some excellent social media shares in there):
The Reaction to Coronavirus Is Making Some Chronically Ill People Angry, And I’m One of Them
https://www.newsweek.com/reaction-coronavirus-making-some-chronically-ill-people-angry-im-one-them-1492256
Another excellent and thoughtful article. Sadly we MCS folk, and many other shut ins, isolated and largely ignored, indeed had hoped that the “‘stick hitting their own head” would accompany compassionate understanding. Linda, and countless others, have fought for years simply to be heard.Our numbers are growing daily, due to our sad polluted world and indeed that world needs our voices and our wisdom. At eighty, retired from pastoral and humanitarian work, YT to NL, I have rarely seen a group of more compassionate and courageous people than the chemically injured, MCS/EI. Beyond time now to listen carefully to,our canary warning songs.
Thank you Byron. I hope we live to see the changes we need being implemented.
Thank you very much for putting all these words together, Linda!
You’re welcome. Wish I could do more.
Thank you again for sharing this awareness. I read your other article about the parallels on this pandemic and our lives, too. And I’m seconding what they’ve all said above: your work is amazing and so very appreciated.
thank you <3
I am not well enough to read all this today… in the middle of this corona hysteria … I just happen to be sick. I live with other people was wondering what the “safe” antibacterial would be? I thought hydrogen peroxide would be good but seems I am reacting to it… maybe need to dilute it more… any thoughts or ideas?
Hand washing is the best thing to do, and don’t touch your face.
For cleaning, you need alcohol that is over 60% … there is bottled stuff, I think called Everclear, but I also think it’s not available in Ontario, but it is available in Quebec, and some other provinces or states.
I use food grade hydrogen peroxide, it doesn’t have additives like the drug store kinds do.
Here’s another option or 2:
“The analysis of 22 studies reveals that human coronaviruses such as Severe Acute Respiratory Syndrome (SARS) coronavirus, Middle East Respiratory Syndrome (MERS) coronavirus or endemic human coronaviruses (HCoV) can persist on inanimate surfaces like metal, glass or plastic for up to 9 days, but can be efficiently inactivated by surface disinfection procedures with 62–71% ethanol, 0.5% hydrogen peroxide or 0.1% sodium hypochlorite within 1 minute.
Other biocidal agents such as 0.05–0.2% benzalkonium chloride or 0.02% chlorhexidine digluconate are less effective.
As no specific therapies are available for SARS-CoV-2, early containment and prevention of further spread will be crucial to stop the ongoing outbreak and to control this novel infectious thread.”
https://www.journalofhospitalinfection.com/article/S0195-6701(20)30046-3/fulltext
…
Great article, thanks for breaking down the highlights of what those people in quarantine felt was a struggle for them. In comparison to what us MCS folks go through I can’t help seeing it as a mere drop in a bucket and it makes me aware once again of just how much we ENDURE.. without blinking.. compared to the mass hysteria we’re seeing at the very mention of ‘social distancing’ – the new buzz word. This article is comforting.. it’s just good to know others understand that isolation and quarantine.. is our ‘normal’ and making do with very little is our everyday stuff.
Thanks… yes… enduring normal to us experiences… and then some…
Some of us still have no access to health care in this or any other time…
From the Ontario Government’s Task Force on Environmental Health’s Interim Report (2017 – but the 1st report was in 1985, and recommendations from that and other reports have also yet to be implemented):
Recommendation #3.1
…
As a first step, the task force is focusing on hospitals and long-term care homes: settings that can be challenging for Ontarians living with ME/CFS, FM and ES/MCS.
…
There are a number of simple steps that a hospital or long-term care home can take to be more accessible and accommodating and to balance patient safety (including the need for infection control) with accessibility and accommodation.
For example:
•
implement and enforce a rigorous fragrance and chemical avoidance policy
•
ensure all employees are aware of the need to accommodate patients or residents with these disabilities
•
create awareness of measures such as adjusting lighting and sound, and developing a care plan that supports care with minimal touch
•
provide patient room signage to eliminate the need for patients to continuously advocate for their needs while receiving care
•
develop procurement and contractor policies to purchase low-emitting furnishings and materials, use low or no VOC paints, and adopt cleaning supplies that meet provincial standards while also being low or no scent.
…
“Time for Leadership: Recognizing and Improving Care” is a report from the Minister’s Task Force on Environmental Health, which recommends improving the understanding and recognition of environmental health conditions such as myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia and environmental sensitivities/multiple chemical sensitivity.”
Thanks for the answer Linda I bought and am using nature clean hydrogen peroxide I can’t seem to find the percentage on the bottle or the website … think it is too strong to use full strength have been watering it down but am unsure if it is still active. That is what I have done anyway and never mix it with vinegar it creates a new unhealthy gas when mixed.
Bit of a story when I went out to buy it…. I was of course wearing my mask and one man was laughing at me as I was going into the store… bet he thought I had corona hysteria… so I went up to him and told him I have been wearing this mask for 4 years now it is not because of the virus.
While waiting in line another man who actually looked a lot like the first one tall heavy… beard… actually took my picture… I was not leaving my place in line to talk to him picking my battles… but I would not be surprised to see my picture online some place under the heading of corona hysteria…
One other person said I was smart for wearing a mask… told her I had no idea if my mask was safe against a virus or not but I needed for mcs… so there you go a lot of attention to my mask all of a sudden … 3 people in one trip… not that people don’t stare but they don’t usually laugh in my face take my picture or come up to me wanting to talk about … mostly people pretend they don’t see me … on a normal day. Not so now there is a virus issue.
stay well stay safe
peace to you all
Oh my goodness, people can be so strange, and disrespectful.
I don’t math well anymore so I can’t tell you about the h.p. %.
I hope you are able to avoid getting this virus and I wish people were taking it all more seriously.
I read the article thanks Linda :) as for politicians and our getting more help… put a helmet on if you choose to continue head bashing against some poor buggers wall can be hard on the head. Thanks for the effort. I am not expecting any changes in the gov towards us… if anything they will be poor after this virus things could get worse for us.
I read the link above as to why we don’t get the help that was good too… you sure have done a lot of work on MCS issues.
I would like to leave you with a quote I found long ago that explained a lot of the world to me….
It is difficult to get a man to understand something, when his salary depends upon his not understanding it.
peace ;)
That is the quote of our times!
But times change… things change… This is also a time of great opportunity, where awakening is possible.
People are not getting the climate and pollution crises, but this is giving many people more time to perhaps see and consider how the ways of our society might not be sustainable… and seeing what is important… We can hope!
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Hi Linda, I referenced your two blogs and quoted you in this blog of mine. I hope this is okay! https://ladyofthelake.blog/2020/03/19/welcome-to-my-mcs-life/
Thanks Amy…
It can be so bloody exhausting as more and more barriers arise…
I am seeing some acknowledgement, which is great (you can see who really has a heart) but there’s still a lot of denial from those who are only temporarily inconvenienced and distanced… and many people do not have the coping skills we’ve had to develop over the years… over and over again… but I digress (kind of).
Thanks for keeping on! <3
Aislinn Thomas shared this on fb
and then she worked those thoughts into a longer piece (some excerpts below):
Excellent essay from Aislinn Thomas…
…
“I don’t experience or expect the same level of trust on a large scale – ableism is too much of a thing 2 – but I dream of a future in which everyone is valued equally, one where we can name the things that get in the way of an ethic of committing to figuring out a solution that leaves no one behind. As a species we are capable of bringing such creativity to the problem-solving involved in even the most complex and uncertain contexts – especially if we can broaden the confines of normalcy (see below).”
…
I’ve been reflecting lately about how trying to pass as “normal” (for my own comfort or others) holds me back from wellbeing. I had a moment recently where I stepped back and failed to recognize my own life. It feels at times like I’m living in an alternate reality. This fall I had to radically transform my already weird home space. I began reacting to the second-hand fragrance and chemicals my partner picked up at work and other public spaces, and we had to devise new strategies pronto. Now we sequester work clothes (and other compromised items) on a covered fire escape and have a complex ritual for when my partner comes home.”
…
I want to name and affirm that this is a scary time for all of us. And I want to name and affirm that it is an especially scary time for those who are not seen as valuable, who are experiencing re-traumatization, who cannot trust that they would be deemed worthy of saving, who experience the medical system as hostile,4 and who are marginalized in countless other ways. Please, let’s be there for each other. Now and always.”
…
https://akimbo.ca/akimblog/disability-creativity-and-care-in-the-time-of-covid-19-by-aislinn-thomas/
Related,
from Sins Invalid – An Unshamed Claim to Beauty in the Face of Invisibility:
Social Distancing and Crip Survival: A Disability Centered Response to COVID-19
https://www.sinsinvalid.org/news-1/2020/3/19/social-distancing-and-crip-survival-a-disability-centered-response-to-covid-19
Thankyou Linda and everyone else for sharing these thoughts and feelings♡
A few weeks ago I also experienced ridicule by some ignorant souls who started coughing and then laughed at me when they saw me wearing my breathing mask : ( Corona hysteria ???
I live in Spain, now we are in ‘state of alarm’, almost everyone is desperately trying to buy ‘protective masks’ (ffp2/ffp3) and my regular supplier doesn’t even answer my emails!
The doctors and other medical staff don’t have proper protection against this virus and are falling sick and being sent home in quarentine/isolation.
There are not enough hospitals, beds or medical staff to attend to all the sick and dying, the doctors must ‘choose’ who should be saved and who should be left to die : ( this is an extremely sad, depressing and fatal situation!
I believe those ‘ignorant souls’ must now feel very sorry for their silly ignorant behaviour and riduculing.
If anything we are blessed because we ‘know’ how to ‘avoid’ what harms us and have experience in endurance. I know that sounds strange but we are actually being ‘saved’ in our isolation.
May the Lord bless us and help us all ♡♡♡
Isabel Abbott gives many other examples in her article below:
…”Watching abled people (If you are not disabled, you are abled) respond to this crisis now makes me realize they either never believed me before or either did not care. Now that it is them, they have all the urgency in the world. Now that it is them, resources and access is suddenly available. Now that it is them, things matter. Now that it is them, they want to know, and they find it important.
None of us know what is going to unfold here, how long this way of life is going to last or what it looks like on the other side. It is an unknown.
What I do know, is that many of you will return to certain aspects of your life before. It may not be the life of before, but there will likely be a sense of returning to activities you once enjoyed, and going back to work, and life will shift and find its way into something new.
And what I really truly hope, is that in this, you do not forget that there are those of us who will not be joining you.
I will still be mostly at home. I will be in my sick bed, still working and spending hours and hours of my life at home, in bed. I will still be sick and still be afraid of getting sicker. I will still be disabled.
I will still need accessibility for so much of life to be livable. And I hope that you do not forget me and those like me, when you leave your homes. I hope those things you found valuable when it was you, remain valuable when it is no longer just for you. I hope you do not forget the wisdom of these times.”
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View at Medium.com
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I feel this too…
Some people have wondered how businesses were able to respond so quickly to doing things differently…
One reason is because people with disabilities have been fighting to access them in these ways for years, often having to go to court since the businesses would fight tooth and nail saying they could not/would not allow people to work from home, they could not/would not offer services over the phone, or do the shopping so someone could pick up from the store or outside the store, or they could not/would not offer deliveries like they are now offering.
And now that everyone is accessing these services, it’s the people with disabilities who have been squeezed out again, when the services are being used by people who usually do have other options, and by businesses that made no effort to make sure their long term disabled customers needs would be met first.
Go figure.
Great points.
Insightful!
https://www.forbes.com/sites/drnancydoyle/2020/04/29/we-have-been-disabled-how-the-pandemic-has-proven-the-social-model-of-disability/
“The secret was out: the world could be accessible. Inequality was actually a choice.”
https://www.theguardian.com/lifeandstyle/2020/aug/14/my-pandemic-epiphany-watching-the-world-open-up-for-disabled-people
I couldn’t have said it better! Thanks for your outreach work. A fragrance-free hug from Italy :-)