Living with MCS/ES creates challenges that seem unimaginable to most people. Despite some progress (more awareness), due in large part to so many more people being affected, the barriers and obstacles to living in the world as it currently is, can be never-ending when there is industry generated denial that everyday chemicals (or wireless) exposures are hurting and disabling people.
“Remember, don’t talk or breathe when you take your masks off to eat”
It is exhausting to have to constantly ask for accommodations just to be able to exist in a world where safe solutions are often hard to find, or when they do exist, they are not affordable. It can be like living in a world that wishes we’d just go away and leave them all alone, yet… there is no safe place to go away to…
Is it any wonder then, that people develop mental health problems?
When health problems (mental or otherwise) related to circumstances and experiences arise, one is (usually) only truly helped by people who have an understanding of the issues related to the circumstances that are connected to the problems. When that understanding doesn’t exist, appearances can create erroneous assumptions that perpetuate the kinds of harms that caused the problems in the first place.
For people with MCS/ES, exposures can trigger temporary or long term brain and behavior issues that look like mental health problems to people who don’t know how toxic chemicals, molds, food sensitivities, or wireless exposures can affect our brains and bodies. And sometimes we are capable of doing some things, yet completely incapable of doing others, as exposures can affect different parts of our bodies and brains, and for varying amounts of time.
What people also don’t understand, is that when we are able to live free of those exposures, we can be free of the brain or behavior problems the exposures cause.
Finding ways to access goods and services without being subjected to disabling levels of exposures can take 10 to 100 times more effort than people normally have to extend for the same goods and services. Sometimes, despite our best efforts, we cannot safely access the goods and services everyone else takes for granted. These challenges can mean we may need to turn to others for help with survival and coping , yet not only is it difficult to receive practical support,
new research also proves that access to knowledgeable mental health care providers is rare for people with MCS/ES!
“When asked to evaluate their provider’s knowledge of MCS on a scale of “not knowledgeable”, “somewhat knowledgeable”, or “highly knowledgeable”,
41.7% said their provider was “not knowledgeable”,
45% said “somewhat knowledgeable”,
and only 11.7% said “highly knowledgeable”.
As “somewhat knowledgeable” was not defined, it could mean the provider had read an article somewhere, but not know what it means to live with MCS/ES.
“Thirty-eight percent of participants had received refusals for help from mental health providers in the past because of a lack of knowledge or an inability/unwillingness to accommodate the respondents.”
“People commonly sought counseling for a variety of reasons, including work or social discrimination, difficulty in physical functioning, and other issues related to MCS. Many were grieving over their loss of access (ie, their inability to have contact with much of the world because of their intolerances).”
How many people have to deal with the same kind of discrimination from mental health care providers as they do elsewhere?
If your issue is related to something specific, going to a so-called expert who has no real-world experience or understanding about the issue, will rarely if ever provide the kind of help that is needed, and unless that person is willing to make the effort to get educated on the specific causes and conditions relating to the difficulties you are experiencing, can just result in more harm.
For instance, if we have been repeatedly assaulted by people subjecting us to things that harm our health and disable us to the point we cannot go to work or look after our self, then seeing someone who has never had any experience with anyone who has been deliberately and repeatedly assaulted (with peanuts, perfumes, wi-fi, 2 by 4s, etc) by co-workers, neighbours, etc., or who thinks that addressing this as if our wanting to avoid these assaults was a simple preference issue, things are going to get a lot worse instead of better, not just with the disbelief, but there’s also a high chance of them subjecting us to further secretive “testing” to see if toxic exposures really do cause reactions.
When someone has mental health related concerns, discussing them with a plumber usually isn’t very helpful either, but far too often, a person with MCS/ES has a better chance of encountering a supportive plumber than a supportive, knowledgeable, accommodating, and accessible mental health or general health-care provider!
This really needs to change! People commit suicide because they can’t access appropriate support or find places to be free from the disabling exposures.
The following peer reviewed research was published 6 April 2016:
Experiences of persons with multiple chemical sensitivity with mental health providers
by Pamela Reed Gibson, Sharon D Lockaby, Jenna Michele Bryant
Department of Psychology, James Madison University, Harrisonburg, VA, USA
Abstract: In this paper, we summarize the results of an online survey of persons in the United States with chemical intolerance/multiple chemical sensitivity who sought help from mental health providers, including counselors, psychologists, psychiatrists, and others. Respondents reported on their most recent contact with a provider, describing reasons for the contact, accommodations requested and received, and suggestions for how the experience could be more helpful. Overall, though clients were accommodated in small ways, some received no accommodation, and many felt that the providers needed to be more knowledgeable regarding chemical intolerance. Results are discussed in terms of the importance of providers becoming more aware of multiple chemical sensitivity and more willing to make their services accessible to these clients.
The full text is available for free here.
From the Discussion section at the end:
“Medical acceptance and understanding of this condition, proper financial benefits, and work accommodations would go a long way toward improving the quality of life for persons with environmental intolerances.
We believe it is the responsibility of health care providers to study emerging illnesses and disabilities and to contribute positively to the care of those who experience them. Koch et al would like rehabilitation counselors to challenge their own biases toward MCS, revise their understanding of universal design, accommodations, and accessibility, and learn to help clients to communicate with their work supervisors and erode their psychosocial isolation.77
Recently, Gibson et al 78 found, in a grounded theory study, that the core activity of participants, “Healthquest”, was literally a euphemism for “Resisting Annihilation”, given the tremendous obstacles to seeking medical treatment for persons with MCS.
In this study, respondents reported wanting their counselors to understand in detail the triggers, symptoms, and lifestyle requirements of those with MCS, to learn some toxicology, to understand how some psychological conditions such as depression and anxiety can be either toxin-induced or secondary reactions to the lifestyle restrictions, to apply the principles of doing good therapy to this population of disabled people, and to make it a priority to provide an accessible office.
Until and unless therapists are able to address these needs, persons with MCS will struggle for even a modicum of help from the “helping” professions.”
Affordability and home visits or skype type sessions are also important.
Unmet health care needs for persons with environmental sensitivity
Gibson PR, Kovach S, Lupfer A
Journal of Multidisciplinary Healthcare 2015, 8:59-66
Environmental “sensitivities” are not new, nor are they surprising. The systemic reluctance to deal with this has allowed health harming exposures to proliferate to the point where all people are now at risk of suffering chronic health problems from the same exposures that disable people with MCS/ES.
To all health care providers:
The oath to cause no harm means not wearing or using fragranced products, and avoiding other health harming substances and devices!
To learn more about why going fragrance-free is important (and not just for people with MCS/ES), you can explore the other posts on this site where you will find a lot of info and links, including these:
Health Care Without Harm
Canada’s top medical journal, the Canadian Medical Association Journal (CMAJ), says
“Artificial scents have no place in our hospitals“
Canadian Coalition for Green Health Care
Fragrance Free Implementation Kit
I can go to a counselor’s office, but when I go home, my spouse is angry because I reek. He seems to have issues with me, even though I have given up most of my friends, family, music festivals, political action, heirlooms, furniture, clothes, transportation, many favorite foods, etc, for MCS. I feel like MCS is the favored mistress and I am 2nd or 3rd… I don’t want to leave him, but I cry all the time and cringe when he speaks, expecting more criticism. I cannot use moisturizers or sunscreens, he says products labeled natural are worse than commercial fragrance free & clear. If I state I like something, over half the time, he has reasons I can’t have. If I want to go somewhere, he sulks and gets all negative, then, after I feel guilty for wanting to see my grandchildren, figures out the way I can do it, but I get so stressed that I get physically ill myself. I am crying as usual… MCS destroys lives, even though I don’t have it, mine included.
I’m so sorry Lucia, and so glad you commented!
You are so right that MCS can dramatically change the lives of everyone connected to someone who develops MCS/ES.
Please try to remember that he is not criticizing you or your inherent worth when something has affected him.
Toxic chemicals and other contaminants are hurting him and his ability to speak in a way that takes everything into consideration. It can be a struggle to find the right words when it feels like something is beating you with a 2 by 4. Some of the chemicals scramble our brain functions so much that it’s hard to have any control over what happens emotionally or verbally. Maybe you can try to discuss this when you are both having a quiet time together with no exposures, to try to find some language or signs he can use that feel safer for both of you?
We live in a very toxic world where we can’t depend on labels to tell us the truth.
That said, surely there’s a way to find products to test in order to discover something that works for you and that he can also tolerate!
It can take a lot of trial and error (and money too unfortunately – unless you find a vendor who is willing to work with you and return or exchange the ones that don’t work out)
It’s pretty much a given that when someone in the home has MCS, then when anyone who leaves returns, a shower and change of clothing is required. The people who can afford it, have even built separate washrooms with separate laundry rooms to provide a detox area before entering the rest of the home.
I’ll see if I can find the clip about the decontamination unit that was shown in the “Nose” episode of the Castle tv show (I didn’t see the show, someone shared it on fb)
Regarding a social life for you, with some creativity, and co-operation, it is possible for you to still enjoy some of the things you used to enjoy, but away from home, as long as you develop a protocol to detox when you return. I know a lot of couples who figure out how to do this, as well as figure out ways to have some safe and enjoyable time together with your spouse. Remember that he has no way to participate outside if no-one else is willing to make the life-style changes, and that feels like total rejection, when people choose products over him.
Hopefully you can find ways to appreciate what you both do have and can do, and look for ways to grow together. I am aware of a couple of online support groups for the spouses and family of people with MCS/ES, if you are interested? You might be able to find help and new ideas there? Let me know.
I found the clip from Castle…
It would be great if someone could develop a painless chemical decontamination/detox chamber to make everything safe
Here are a number of other scenes from the Nose episode (most of which I have not seen)…
From the 3 I did see, she clearly didn’t have disabling MCS, but she does have an extraordinary sense of smell
Yes, I am interested in a support group. I am so tired of feeling hurt and scared and wrong. No one I know understands. Might help.
There are 2 that I know of. One is public, so there isn’t a lot of discussion on it, the other is a closed group that was started more recently where only members can see the discussions.
1. The public group: MCS Support for Family and Friends – https://www.facebook.com/groups/MCSfamilyfriends/
2. The closed group – Spouses of MCS Sufferers https://www.facebook.com/groups/582374838588187/
Lucia, here’s an article showing why so called natural and organic products are being problematic (and it’s not because people with MCS are imagining things):
“Already under fire after The Wall Street Journal reported that Hain’s Celestial Earth’s Best baby shampoo contained a chemical cleansing agent despite claims to the contrary, Hains Celestial in February separately settled for $7.5 million a class action by a California resident and the nonprofit Center for Environmental Health, or CEH, which sued over the organic labeling of its Avalon Organics and Jason personal care product brands.”
I am well versed in reading labels. I use castile soap and baking soda to clean hair & body. I don’t doubt his strange sensitivities. I begin to despair when he can tolerate a house full of new carpet, new cars, new computers, new phones, but not even look at a new fleece pillow I wanted. The furniture I want comes from a website that has the Ashley Furniture he wants but he has heard stuff about Wayfair. When I brought up the Dove body wash he was using while belittling me for wanting to use make up, I got a mouthful of Dove. I think mcs has had a drastic effect on his brain and I don’t know how much longer I can live like this. I can see how it seems I don’t know how bad an exposure can be, but he exposes himself when he has a pay off for doing so. No one but I gets the repercussions.
I believe some of his headaches are from the stress of trying to control me. I can’t continue like this, but how can I leave when I pay the mortgage, car,taxes,insurance and utilities on the clean house and he has only a small disability income. I am ready to be homeless but
Sent from Samsung tablet
I wish you had access to MCS-safe couples counseling ((( <3 )))
I think some med psych student could get a good project out of that. However, my experience with the clinical side of Lansing’s med school was denial, suspicion,and humiliation. In addition to dealing with his reactions.
Sent from my Verizon Wireless 4G LTE DROID
Seriously Sensitive to Polluti
Perhaps the JMU research team will look at how families are affected in a future study. I don’t remember reading one about that
Or maybe Alison Johnston wrote about it in Amputated Lives. I haven’t read the whole book, just excerpts…
Excellent post. At some point I’ll say more but I’m still recovering from the fact that I opened a box of new garbage bags yesterday — that were strongly scented. Did I mention that NO WHERE on the box did they warn me of this danger?
GRR about the bags… and what they did to you!
I recently saw another discussion where that happened to other people too.
Second and third hand contamination is hard enough to deal with, but 1st hand unlabelled fragrance chemical assault should be punishable by law!
Hope you recover quickly!
I stupidly thought if I aired the bag out in my garage (48 hours) it would be usable. With a dust mask (not an MCS mask) and working as quickly as possible to put something in the bag — I still had a strong reaction. I think it is time to write a letter and see what the company has to say about this.
They definitely need to know. Perhaps also report it to the Consumer Products Safety (place whose last name I forget)
Oh and I saw the Castle episode. She did not have MCS — just an incredibly heightened sense of smell.
I watched the longer version of the clips last night.
It would be great if what we can smell didn’t disable us the way it does!
A heightened sensory awareness is so much easier to deal with!
I’ll take cranky over disabled any day!
I know there are a lot of downsides about romanticizing the “good ole” days like I wouldn’t like to give up flush toilets — BUT I would love to go back to a time before humans decided they could “improve” nature by inventing toxic chemicals.
Having lived with only an outhouse for a winter not too long ago, I have to agree about the flush toilets, having them indoors is especially nice… hot water and showers too…
Too bad “better living through chemistry” has destroyed so many lives in the names of convenience and profits…
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You can access and download a powerpoint presentation here:
COUNSELING CLIENTS WITH ENVIRONMENTAL SENSITIVITIES – A GUIDE FOR THERAPISTS
by PAMELA REED GIBSON