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.
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:
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.
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