My Family’s Healthcare Nightmare
I, Dayna, am writing this painful story about my family. My family suffers from painful severe chemical sensitivity, specifically sensitivity to neurotoxins in fragrances of the public and healthcare staff. To give you some idea of where I am coming from here is a brief background on my MCS and how it’s affected me in OR. “I am a sufferer of, Toxic Induced Loss Of Tolerance or TILT. My painful story: I grew up in a family of chain smokers who nearly killed me before age 13. Everyone in my family wore overpowering artificial fragrance and the combination was lethal and made me feel very sick. I was also exposed to high levels of pesticides in places I worked and at school. I was diagnosed by a pulmonologist with severe asthma. My husband’s painful story: “I once upon a time wore all kinds of colognes, after shave, used heavy scented detergents as well as air fresheners and then one day I had a accidental high exposure to industrial cleansers at a job site and that’s all she wrote!” People refer to it as having allergies. It’s not an allergy. It’s an immune disorder and there is no cure for now. The only thing we can do to be safe and healthy is avoidance. We must avoid situations where people are wearing artificial scents that can make us severely ill. We don’t have a choice.
My husband recently shared this with a state agency because of our painful environmental illness and I’m sharing it because it’s relevant. Now, at this point I realize I may be preaching to the choir. You may be very aware of what I am referring to. Now to the problem, first off I must add, my wife is as sensitive or worse and she too can not go into our local DMV without becoming ill. At this time, I would like to refer to this web site http://www.lectlaw.com/filesh/csl01.htm … that explains what we are going through and defines our rights according to ADA. You may or may not know that despite MCS being considered an “invisible disability”, it is still recognized by the ADA. My wife and I are being treated like second class citizens everywhere we go or should I say can’t go and can’t be accommodated in OR. Does that have to be at the state level too?
I want to further add that there was at one time a state policy in the personnel manual that reminded employees to refrain from wearing scented products, however for some reason that is no longer in the manual, If you go here http://www.oregon.gov/das/Pages/policieshr.aspx … and search the word “fragrance” in the search box to the right, you will get a hit that says “Remind employees that some employees and customers may be sensitive to fragrances” and it is a PDF document but nowhere in the PDF does it state that, I.E. it was removed! Why on earth would the state remove such a personnel policy that protects employees and the public’s health? Of course, if there is no policy in place then there can’t be much done about the issue. At least, that’s what I have gleaned from conversations with DMV employees as I am sure all state policies govern all state agencies and no one agency makes it’s own policy. Or do they? The same applies for DHS where it makes the most sense, given people with health issues are severely affected.
We are including some of the information we shared with Oregon state agencies because it is also relevant here, but we will focus on healthcare. All three of us, our near five year old son, my husband, and myself are very much in need of healthcare – mental and physical (including dental) – and all we are asking for is a reasonable accommodation for our special needs disability. We are simply asking that any healthcare provider who talks with us and wants to help us with our healthcare needs be scent-free and that includes detergent because today’s detergent is 1,000 times worse than those we grew up with as children. You can read an article I wrote about the health hazards of using commercial detergent and its harmful detriment to the environment in a link that is on the top right hand side of this blog. We need to be able to breathe and feel safe and think well and that is not possible if a doctor or healthcare provider stinks of artificial scents with neurotoxins that could knock out a cow.
My husband and I have called several healthcare offices with the intention of making appointments for the three of us to be seen and when we asked them about scent-free policies, they said very clearly that they do not have such policies and will not be able to accommodate us and recommended we go elsewhere for our healthcare. We have heard the same thing at least five times and continue to have doors slammed in our faces. Recently, our son had his wellness check by our Family N.P. and we all had healthcare issues to discuss with her and while we were filling out our paperwork while waiting to be seen, several patients walked in and nearly killed us with their artificial scents and neurotoxins and as if that wasn’t bad enough, a couple of the nurses in the back in the office next to the 1 we were in, stank of artificial scent and we all felt very ill while talking with our Family N.P. Halfway through our appointment with her, we had to hurry thru the appointment and leave. Needless to say, we can’t return to the Newport location. We also can’t go to the Lincoln City location. The staff there is better because one of the nurses is painfully chemically sensitive like us and she can’t tolerate artificial scents with neurotoxins either. This is absolutely horrible that our family has a very important basic healthcare need and because healthcare staff is ignorant to the fact and refuses to listen and understand the connection of the health hazards, we have to continue to suffer. When you walk into the LC clinic, there is a sign on the wall that clearly states that no scented products should be used or worn to protect the health and safety of those who are chemically scent sensitive.
When we lived in Corvallis three years ago, the three of us had a doctor appointment with the local clinic and they had a scent-free policy. When the intake called us in to check our vitals; blood pressure, oxygen level, etc., he nearly killed us with his cologne and he closed the door after we walked inside and we told him to open the door because his cologne was making us sick and we severely chemically sensitive and he said that because of HIPA, he had to keep the door closed and my husband said, “forget about HIPA, we aren’t concerned about our privacy, we need to breathe and we can’t.” He didn’t argue. He closed the door. We complained about him on our way out and we learned that he was spoken to and stopped wearing the cologne.
At a dentist’s office in Newport, the three of us had appointments and while I filled out my forms in the waiting room, I smelled an overpowering artificial scent that was killing me. At first, I couldn’t think well enough to determine what it was and then I looked at the receptionist and my jaw dropped when I saw the can of a commonly used deodorizer known to contain harmful neurotoxins sitting on her desk. I asked her about it and she told me it was just sitting there and she hadn’t used it and I said to her, “you are telling me that it’s sitting there and you haven’t used it and yet somehow the whole room stinks of it? You must think I’m a fool.” I mentioned it to the dental hygienist who examined my teeth and she was surprised to hear the receptionist was using it because they have a scent-free policy.
Last year, I called a clinic in the SamHealth Network looking for mental health therapist to talk to about some emotional difficulties I’m having and that I need to talk and I expressed my concern about artificial scents and I asked if there is a therapist I can talk to and feel safe and I can breathe and the receptionist told me they don’t have a scent-free policy and she recommended I go elsewhere, as they would not be able to accommodate me.
Now, I might add that both DHS in Newport and Lincoln County DHS Clinic in Lincoln City there are signs that are posted: “Please Refrain From Wearing Fragrances”. Just Google: “Lincoln County Fragrance Policy.” From Lincoln County Personnel Manual, search “fragrance” in the PDF. Here’s what it says: PERSONAL APPEARANCE “3. Some individuals react adversely to fragrances and may develop headaches or other physical problems when exposed to fragrances in the workplace. Employees should refrain from wearing perfumes and/or any other scented products to work. Employees who report to work wearing offensive fragrances shall be asked to leave and not return until they are fragrance free. Time away from work to alleviate the offending fragrance will not be paid time.”
It’s interesting to note that the health food store chain Natural Grocers here in OR has the same strict policy. Most of Portland, including the police record bureau, has a policy as well. It’s apparent these policies exist not only to protect employees and employers from potential litigation, but the public as well. At this time, I will make it very clear that this issue with neurotoxins in scented products is a very serious public health issue and is not being taken seriously by certain state agencies other than from what we know of D.O.J. which allegedly accommodates one of its top attorneys with MCS, and the Department Of Corrections which also has a very strict no fragrance policy https://www.oregon.gov/doc/OC/docs/rules_policies/20.1.6.pdf
So, let me understand correctly, you have to go to Prison to find a state agency other than D.O.J. that recognizes fragrance is a serious public health issue? Like I said, If you can’t breathe, nothing else matters! That is a true statement that the American Lung Association Supports and they too recognize that artificially scented products are toxic. It states clearly on DMV web pages: “Reasonable Accommodations For Customers with Disabilities DMV serves customers who qualify for Oregon driver and vehicle services without regard to mental or physical disability, race, gender, age, national origin, religion or other classes of protection required by law and ordinance. If you need any special accommodations because of a disability so that you can obtain DMV services, please contact DMV.”
To be clear, we are not asking the patients be told not to wear artificial scents because they come and go. We are saying that the healthcare staff needs to be scent-free because they work in the office all day and everyday and the scent on them permeates everything, including the wall, and they are putting everyone at risk. We don’t have a choice. We must be able to breathe and if you can’t breathe, nothing else matters.
We have been looking for providers with whom we feel safe and comfortable, but each one we contacted is located in Salem or Portland, more than an hour from where we live and they are out of the geographical network for our region. OHP Oregon Health Plan is the authority and the network they use for our region is InterCommunity Network and OHP told us very clearly that if we want to see someone out of the network, we need the provider we want to go see to apply for an Open Card on our behalf and make a strong valid argument as to why we need to be released from the network and most providers will need to examine us first and need to see us regularly, which as I’ve explained, is not possible because of our severe chemical sensitivities environmental illness. The reason why we are seeking a holistic naturopath healthcare provider is because most conventional medical healthcare providers wear artificial scent and we have met very few who are aware and understand how harmful artificial scents with neurotoxins are and our F.N.P. is one of the few providers we have met who has made the connection and is scent-free.
We tried that with an alternative provider in Portland and OHP claimed that there was not enough evidence to show that we need the out of network provider. Our hands are tied and OHP refuses to release us and give us the Open Card so we have the freedom to see any provider we wish to see and yet there are certain people who are automatically mandated and entitled to Open Card and yet disabled people who have special circumstances and need special accommodations, like my family, are being denied for no logical reason. OHP told us very clearly that if we want to go see someone with whom we feel comfortable and safe, we will have to pay out of pocket and we are not able to financially, which is why we have OHP. This is unconscionable.
There is a clinic on the Oregon Coast that is in the ICN and has a very strict scent-free policy and the staff goes as far as to tell patients who come in stinking of overpowering artificial scent to leave and wash it off and do not come back until it’s gone and people can breathe around them. They are not within a reasonable distance to travel to and their scheduled appointment times aren’t reasonable either.
If you are a canary painfully suffering from MCS environmental illness and you are sick and tired of being sick and tired, please share this and help me get the word out about this very crucial health issue. If you are with the media and you are reading this, please contact me so I can have my voice heard and share my story. Please like my Facebook author page: http://www.facebook.com/earthstewardwriter and follow me on Twitter: http://www.twitter.com/notperfume You can also email me at firstname.lastname@example.org