I want to say, upfront, that although I’m writing this as a “Waspish Wednesday” post, I’m working hard not to be waspish (which, for those who missed the post where I defined “waspish,” means irritable or stinging). In fact, this is a complex issue, and both the issue and the bloggers I’m addressing are worthy of respect.
This post is part of my MCS Awareness Month activity (despite that it is now June), and I want to raise awareness in the truest sense — where learning and openness to ideas take place — not where I just say, “You’re oppressing me! Now stop it, and — as for your own feelings — suck it up!” And you respond by shutting down or flaming me or feeling angry or guilty or whatnot.
No, that’s not my goal, because I like my readers and the bloggers to whom this is addressed. I don’t want to contribute to your pain in an effort to alleviate my own. I want to be heard, and to know that my needs (and the needs of others with MCS) matter to you, while also recognizing you have needs, as well.
Mostly, I’m hoping this opens up a dialogue and that, regardless of the choices you make after reading this, your decisions will be more informed about the potential impact they have on me and others like me. I’m hoping for mutual care and esteem between my fellow bloggers and myself.
Here we go.
I’ll start with some basic definitions and explanations. MCS stands for multiple chemical sensitivity, which is a condition usually caused by chemical injury — either a single, acute exposure, such as a major chemical spill at work or pesticide exposure at home — or a series of low-level exposures, such as working in a sick building or a beauty parlor or dog grooming facility or getting new furniture and carpeting.
When someone becomes sensitized, an effect called spreading occurs, which means that although the person might have been sensitized by a single chemical or class of chemicals, over time, they become sensitized to more and more classes of chemicals. The great majority of MCSers also develop sensitivities to foods and common allergens, such as mold and dust, and many have electro-magnetic field (EMF) sensitivities, as well.
There are two major distinctions to be aware of when talking about someone with allergies or “some chemical sensitivities” (CS) versus someone with true MCS.
- Allergies are mediated by the immune system, and are usually limited to certain triggers (such as dust, pollen, dander, certain foods, etc.), and can usually be controlled with antihistamines and/or steroids.
- Some CS is extremely common. About one-third of the population has adverse reactions to a limited number of chemicals. The most commonly recognized are smoke, fragrances, car exhaust, and the like. This number is on the rise, as is the prevalence of “true” allergies.
MCS, on the other hand, involves adverse reactions to dozens or hundreds of chemicals, affects multiple organ systems, and generally cannot be interrupted with medications or other treatments. Further, the more exposures an individual has to chemical triggers, the sicker they become. (The illness is progressive.)
MCS seems to be mediated primarily by the central nervous system, although any system can be affected (skin, eyes, genito-urinary, respiratory, liver, reproductive, etc.). Reactions can be immediate or delayed or both; they can last for hours, days, weeks, or months. Therefore, when an MCSer is exposed to a trigger, their reaction is one of being poisoned, often experiencing the symptoms of poisoning that would accompany a massive exposure to that chemical by a “normal” person. An exposure to a trigger for an MCSer is not an allergic reaction; it is a form of systemic poisoning.
This is not to say there are neat, clean divisions between these categories. Most people with MCS have allergies, and a lot of people with allergies have some chemical or food sensitivities.
Sometimes it’s difficult to respond calmly and rationally to an exposure. Partly, this is because usually we can’t think straight, because our brains are affected (which can range from brain fog and confusion to migraines and seizures or loss of consciousness), and partly because we feel as if we have just been assaulted. Which we have been, whether intentional or not; we have just been poisoned.
Further, because almost every place in the world is full of chemicals that make us sick, we are usually extremely isolated. Many people with MCS are restricted to their homes. It is more common than not for MCSers to be homeless at some point, often living in their cars or in tents, because their previously safe home was contaminated or because they cannot find a safe home. Most MCSers do not have any meatspace friends or social interactions, unless it is with someone else who has MCS.
According to the “medical model” of disability, the problem is that the MCSer is sick/chemically injured. According to the social model of disability, the problem is that almost everyone in the world — basically, virtually everyone who does not have MCS — is choosing to use toxic chemicals that keep us confined to our homes.
Understandably, emotions tend to run high on this issue.
The one place where many MCSers have freedom to interact and a social life — if we do not have severe EMF issues — is the internet. On the internet, we can interact with, and become friends with, scores of people — people we would never be able to come within 20 feet of IRL. For me, this brings a sense of freedom and acceptance that I would not have otherwise.
I try very hard to ignore the fact that everyone I interact with online, except for a few other people with severe MCS, are probably making choices every day that limit my life and the lives of other people with MCS. I pretend that they are just like me. Especially if they are also disabled or involved in disability-rights activism.
This doesn’t mean I’m a fool. I know that when I read a post about going shopping or out to eat or to school or work or to visit a friend that those are all things that person can do that I can’t. It twinges a bit, but I’ve gotten used to it.
What is much, much harder to take is when a blogger I follow, and I follow almost exclusively disabled bloggers — usually disability rights bloggers — promotes the use of fragranced products on their blog. Then, I can’t pretend anymore that we could ever meet IRL or that they are truly my allies in a deep way.
That feels painful. And I don’t know what to do with that pain.
It started with a post on FWD/Forward, the feminist disability rights blog, which was my very favorite blog, ever. (Moment of silence to honor FWD; no longer posting, but still a treasure trove of archived info.) The post was entitled Things that Make My Life Easier: Black Phoenix Alchemy Lab.
In a nutshell, the blogger wrote about how using these perfumes helped take her mind off her chronic pain and fatigue. This is a blogger I like (her blog is one of the few I subscribe to), and I relate to a lot in her posts about living with chronic pain. This made the situation all the more confusing and heartachey for me, because I want to feel companionship and sisterhood with my fellow bloggers, especially when they are disability-rights advocates and feminists with chronic illness! These are my peeps!
I was really shocked, therefore, and upset, that a disability-rights blog(ger) was promoting a perfume product. This is not to say that the post was unthinking or unfeeling. For one thing, the blogger was writing about a way she has found to live better with chronic illness:
As a person with chronic pain, I have found that certain things having to do with the five senses that take my mind off of my pain — even for a few minutes — makes dealing with pain and fatigue much, much easier. . . . I have personally benefited from wearing the . . . essential oil blends in which the Lab specializes. . . . [M]any of these blends have helped me to relax, focus on a different sort of physical sensation that is not abjectly, horrendously painful, and generally be more comfortable as I go about my day.
I think that everyone who lives with severe, chronic pain (or even moderate chronic pain or intermittent severe pain) can relate to grabbing hold of anything that will make the pain more bearable, at almost any cost. I’ve had many conversations with others who have multiple disabilities or symptoms, and we all agree that pain is the worst. If I could exchange any of my other symptoms being worse for not being in pain, I would. In a hot second.
(I am, in fact, experiencing escalating pain as I write this, and although I have taken my pain medication, if it doesn’t kick in soon, in a big way, I will have to just lie in bed, doing nothing but trying to focus on anything other than my pain. On the other hand, the fact that I’ve continued writing should tell you how deeply I care about this topic.)
FWD has taken on how difficult it is when disabilities conflict in other posts, which I find rare, and admirable. Most people either are not conscious that such problems exist, or they steer clear of this sticky wicket.
In the essential oils post, too, after going into details about which are her favorite scents and why, the FWD blogger ends thus:
[T]he very fact that I wear essential oil perfumes brings up another issue — how to be sensitive and accommodating to fellow PWDs who may have scent sensitivities, allergies, or who may have otherwise painful reactions to scented stimuli. When I’m planning to be out and about, I tend to wear a drop or two at most, usually applied with a q-tip, and allow ample time for the oil to dry before I leave the house; this is not a perfect solution, but I am still figuring out how to balance the benefits that I personally get from wearing these amazingly-crafted oils with the needs of other PWDs whom I may encounter in public.
I will get back to the effectiveness of her attempts to make her fragrance use less problematic for people with chemical sensitivities (and others adversely affected by fragrance) further down. But, at least she acknowledges that her usage of fragrance chemicals is problematic for others with disabilities.
What I found strange at the time (before I discovered so many people with Lyme who identify as having MCS but use essential oils) is that almost every comment to this post said something along the lines of, “I have some fragrance sensitivity/chemical sensitivity, and I tolerate these fragrances better than others” or “I tolerate oil-based fragrances better than petroleum-based ones.” More about this further down.
After this post appeared, however, I began seeing many women bloggers with disabilities enthuse about wearing fragrances or essential oils, and particularly this brand of essential oils. I was even invited, in one of the illness social forums of which I’m a member, to join a group on essential oils and aromatherapy! And several of the people in this group — friends of mine, in fact — identify as having MCS or chemical sensitivity. I actually fled that social forum for a while because I just didn’t know how to handle that situation. I still don’t.
That feeling of helplessness and confusion continues to this day. I see my sister disability-rights bloggers promoting scented products, and I just don’t say anything because I am afraid that if I do, they will either be angry and defensive, and I will lose their friendship. Or they will say something that I experience as dismissive of the severe limitations I live with due to MCS (or to the lack of MCS access in the world), and then I will feel alienated and lose their friendship.
There are other reasons I have gone so long and said little or nothing when I see these posts. One is that I can do a certain amount of distancing and justification: I know I’ll never meet these people in person, so their use of these products is not making me sick.
Another is that I have some empathy for the desire, when life is so damn hard and limited, to make use of anything that makes life easier.
However, my silence has consequences. It implies that I condone the purchase and use of scented products, and/or that I concur with the conclusions that using minimal amounts of these scents, using “all natural” (oil- versus petroleum-based) scents, or not wearing scents on the day you know you will be around someone with MCS ameliorate the harm these products cause.
I’ve reached the point where I’m not comfortable with my silence anymore, because it tastes like a lie. I’ve decided to address those bloggers who want to be allies to me and other people with MCS.
I am not addressing this to the vast majority of bloggers, because they aren’t aware of MCS, and some of them are actively hostile to it. I address it to my fellow bloggers with disabilities who consider themselves disability rights activists and/or my friends, allies, or readers.
Dear disability/chronic illness blogger,
I read your post about how much you love perfume/essential oils. I know you have some awareness of MCS and that you have no desire to harm me or any of your fellow blogging babes. Unfortunately, when you blog about how much you enjoy a fragrance, you are, in essence (no pun intended!), promoting fragrance usage: You’re providing advertising to the company/ies that make these products, and you are acting as a role model (whether that’s your intention or not) of using scented products as a way to live with disability/illness.
Of course, it is your right to blog about whatever you want, and I understand that having a life that is already limited in some ways, you may wish for freedom and spaciousness about what you blog about, as well as how you live your life.
At the same time, I would like you to take into account that not only can I not wear fragrances, but I cannot be near anyone who wears fragrances, or be near anyone who is wearing clothing that has been worn previously with fragrances (because they don’t wash out), or be near anyone who has stood close to someone else at the store wearing fragrances. In fact, if a family member or PCA has been in a restaurant, house, or meeting with others wearing fragrances, it gets absorbed into their hair, skin, and clothing, and then if they come into my house, those fumes make me sick.
In other words, every time a drop of fragrance is used, it is not staying on you or on your skin. It is not just affecting the people around you that day. It is affecting scores of people you will never know about. Any time someone wears scented products, they are contributing to the isolation of people with MCS.
“Well, now, wait a minute,” you might be thinking. “That is a really heavy burden to place on me! I like you, but I live on the opposite end of the country. If I were going to meet you in person, of course I wouldn’t wear scents that day! Plus, I only use natural scented products, and I only use a tiny bit every once in a while. It sort of feels like you’re asking me to be responsible for the health of every person on the planet! I have enough trouble just dealing with my own health problems. In fact, I don’t know anyone with MCS. Or, actually, I do know people with MCS, and I wear this essential oil all the time, and they never say anything. If it was bothering them, they would say something.”
If you are thinking any of those things, you are not the only one, because I’ve heard all of them many times over 16 years. I would like to address them, though not in perfect order.
First, MCS, like almost all illnesses and disabilities, occurs on a spectrum. So, it’s possible you have a friend who identifies as having MCS who is not bothered by your teatree oil. It’s also possible that this person actually has CS (some chemical sensitivity, but not the actual full-blown syndrome) or mild MCS. Some people with mild MCS can tolerate some essential oils. However, I don’t know anyone who considers themselves disabled by MCS (i.e., has severe MCS) who tolerates essential oils. I, personally, am made less sick by cigarette smoke than by essential oils.
People with chemical sensitivity who can tolerate essential oils are the exception rather than the rule. Much like, there are some people in manual wheelchairs who are willing to be carried up a few steps to get into their favorite pub, but I would still not call that pub wheelchair accessible.
Also, because MCS is so stigmatized and misunderstood, and it causes such isolation and lonelineness, it is also possible that you have people with mild MCS in your life and you don’t know it, because they are trying to keep it a secret. Or that they are saying that your fragrance doesn’t make them sick because they don’t want to lose you as a friend. (We have all had people who have chosen their products over us.) Or, it may be that it is only making them somewhat sick, so they are just trying to live with it, because it is not making them as sick as most people’s products do.
It’s true that you and I don’t know each other in meatspace, and that we probably never will meet. In fact, I can pretty much guarantee we will never meet because even if you came to my town, and I would love to meet you (which is true of many, many people I know in cyberspace), I cannot take the health risk it would involve to be around your chemical and/or fragranced products.
Even if you don’t intentionally put on fragrance that day, you are still “wearing fragrance,” because being fragrance-free is not something you can accomplish in one day. If you wear scents, they get absorbed into your hair, skin, and clothing. You usually have to shower multiple times in safe products to get scents out of your hair and skin if you have been a habitual user, and you may never get them out of your clothes. Going fragrance-free is a lifestyle.
I’m not saying you are responsible for the health of every human on the planet. Nobody can ever have that great power. At the same time, the choices we all make affect the lives and health of every living being on the planet to some degree. If you recycle or compost or try to reduce your carbon footprint, you are already acknowledging this reality. When you buy fragranced products, you are supporting the industries that make me and my friends sick, and also pollute the groundwater, harm the birds and frogs, etc. It is all connected.
It’s closer than frogs, too. If you go to the doctor, the store, a restaurant, work, or school, if you walk down the street or live in an apartment building or take public transportation, the odds are very, very high that the products you are wearing are making people around you sick. One-third of the population has some chemical sensitivity. In most cases, this is either smoke or perfume or both.
These people on the streets are strangers to you, but since I know people with MCS all over the country (and the world), you might be wearing something that is making someone I know sick. And you’ll never know it.
As for only using a little bit (or even trying to wash off what you put on in the morning when you see the MCSer at night), I appreciate that you’re trying to make an effort, but the reality is that it basically makes no difference for someone with MCS. It’s sort of like the difference between being punched twice in the face versus times. Five times is worse, yeah, but twice does you in pretty solidly, too.
So, there it is, my blogging friends. I just wanted you to know some of the things that cross my mind when I read your posts about perfume or essential oils. I am not saying you are a bad person for using fragrances, but I hope you will consider replacing fragrances with something else that might be pleasurable to your senses.
Maybe the smell of baking cookies could be as enjoyable. Or the flowers from your garden. Maybe you could learn to love nontoxic, fragrance-free cosmetics. (I do! I can refer you to all sorts of fun personal care products that are considered MCS-safer and nontoxic!) Maybe you could find surprising joy, peace, and pride in being an ally to people with MCS.
I can’t say I have the answers for you, but I know the answers exist.
I will continue to read your blogs, and if you post about using fragrances, I will probably feel sad and lonely and disappointed. I will probably try to skip those posts.
I will continue to hope that you will be able to find ways to reduce your pain, and enjoy your senses — including your sense of smell — in new and exciting ways that have a positive impact on human and environmental health. Thank you very much for listening.
Peace,
Sharon, the muse of Gadget (an all-natural dude), and Barnum (also au naturel)
After Gadget 
Hey, Sharon.
So, first of all: I am sorry to read that I and others are, in pretty concrete ways, excluding you. I am especially sorry that I seem to have “started” this trend. Thank you for sharing your thoughts; though I have a lot of thoughts swirling around in my head at the moment, I may have to take some time to get them together. The conflicts around accessibility stuff can be hard to navigate (although I know it *shouldn’t be* on my end, as I am a person who wears scented products and the answer seems rather obvious).
Thank you, again, for posting this.
Thank you, Annaham, for your comment.
I don’t think you started the trend. If my blog reads that way, I will want to reword it. What happened was that I read your blog, and then another blogger who I adore also posted about these particular scents, but I have no idea if she was already into them — my guess is that she was — although I don’t think she had posted about them before. I think there was a third one, possibly, not sure, but I do not think it was because everyone was following your lead (trendsetter though you are!). I think it’s just *there.*
It was probably that FWD was the only blog I read for a while, and then as I started blogging and met other bloggers, and read more blogs, I came upon it more and more.
For example, I belong to a forum of women bloggers with chronic illness, and aromatherapy and essential oils are blogged about all the time as great ways to deal with chronic illness(!), and I have no idea if any of them ever have read your blog. So, it’s definitely not just you, nor did I ever see you as a ringleader or anything.
What distinguishes your post from others I’ve read (and I thought I put this in the blog, but now I’m wondering if I made it explicit or not — I can’t think, I worked on this post for so long, I’m bleary) is that you actually brought up the issue of adverse reactions to fragrances and how that was something you were trying to figure out. I don’t think I’ve seen anyone else do that. So, that’s why I wanted to include your section on that, because you really showed some caring about the issue, which I appreciate. That is very, very rare in my experience of the other blogs, and that is the hardest part — that almost nobody seems to give it a thought — but you did.
And I appreciate your response, here, too.
I love your writing. Not only do you give me important info (which can be sometimes vey, very dry) but you put a face on it. You make me want to understand it. I had no idea…
If you get a chance, could you write a post about (specifically) what a person would do if they wanted to meet you? You just never know when I’m going to fly across country and want to meet you and Barnum 🙂
But seriously…it might be a lesson in futility or it might be something that I’ll keep tucked away for when it become Very Important. Thanks!
Oh wow, Kathy, I got all excited at the thought of a visit, but then I am also afraid to get my hopes up, because I generally assume that unless someone else has severe MCS, it’s not going to work out so well. But, you never know!
Yes, I will try to remember to write a post on this. I have such a long queue of drafts, including many MCS ones, that sometimes I wonder if I will ever get to them all! But, I will add it to the queue.
Hm, “very, very dry.” Good for wine, I think, and IMO for humor, but not so much for writing. Oh dear.
I don’t have MCS, but I do try to eliminate chemicals from my life where I can, since mostly they make me itch, sneeze or otherwise miserable. I’ve gone no-poo and no soap other than handsoap (that’s purely convenience… if i change everything at once, i’ll never stick with it!).
I know this is a very newbie-type question, and appreciate that those can be frustrating, but I’m very interested in what you DO use.. laundry soap, deodorant, household cleaning?
I admit I use tea tree oil quite a lot for bacteriocidal purposes, since it works great and doesn’t make me itch or sneeze. My deodorant is a tea tree one as well, but it does make me itch (other chemical crap in it, i expect). Anyway, for me, it’s an ongoing journey, and one I struggle with. I don’t think I can commit to going chemical free (i drive a car, for one thing) but I’d be interested in links to resources on household products that might help me be less itchy!
Hi Courtenay,
No, it’s not irritating at all. I will try to compile a list and post it. I get asked this question a lot.
It’s important to keep in mind that sensitivities vary, so since you already have reactions to things (itchiness and sneeziness and such), you will want to start out with a small size of whatever it is and test for tolerance.
I can tell you, just off the top of my head, that I use baking soda and vinegar for most of my laundry. It does not make your clothes smell like salad dressing! I use 1 C each. (White vinegar I get in gallon jugs. I also get baking soda in bulk — you can do almost anything with baking soda.)
Sometimes I use another product for things that need heavier-duty cleaning, but it’s not widely available. However, 7th Generation Free & Clear products are good and widely available. They make a laundry detergent, a dishwashing liquid, and I’m not sure what else. Just check that they are not the ones with added lavender or citrus or whatever. (I dunno why they started doing that! Grr…)
Arm & Hammer makes a detergent — the powder, not the liquid — that is basically just baking soda and borax, and that is usually well tolerated. Again, just check to make sure it’s not scented. They used to do all unscented stuff, and then they started adding scents.
Household cleaning, almost everything can be accomplished with baking soda, hydrogen peroxide, vinegar, or Bon Ami.
Baking soda and Bon Ami are for scouring. Baking soda is particularly good for shining silver and pans and such. A lot of people use Bon Ami for tubs and sinks and counters.
Hydrogen peroxide is good as a replacement for bleach. It whitens and disinfects, and if you have scum or mildew or mineral stains around your drain, it will eat them up! It kills mold. Borax prevents mold.
Vinegar is good for cleaning shiny surfaces, like glass. Vodka also works for that, and is good for deodorizing and disinfecting.
I don’t wear deodorant, but there are two places I know you can get MCS-safer/nontoxic brands — The Living Source (google it — is in Waco TX), and NEEDS.com which is in NY (Syracuse, I think). NEEDS has better prices but not all of their stuff is fragrance-free, but if you ask them for stuff that is, or for MCS-safer stuff, they can tell you.
One that most people can get at the store is Toms of Maine unscented. Some people tolerate that better than others.
I use arrowroot powder if I need body powder or something like that. Some people use cornstarch or baking soda.
One company that makes products for MCSers and is owned and operated by a woman with MCS is Magick Botanicals. She has a website. I think it’s magickbotanicals.com. She has shampoo, conditioner, gel, powder, etc. She also sells samplers, so you can test out the various products in small sizes and see if you like them. Her products have gotten very popular and you can usually find them in major health food stores and food coops and such.
There is also a company called LifeKind that makes nontoxic personal care and cleaning products. They, too, have added lavender or whatever to some of their stuff, but they also have everything fragrance-free, as well, I think. I believe they are LifeKind.com.
This is by no means a comprehensive list. But it should get you started, I hope. Oh! Jasons makes very nice stuff. It’s pricey, though, but I like their conditioner. They make a body wash, shampoo, conditioner, and they make deodorant or other things, too, I dunno. You can find it at Whole Foods and other places like that.
You can also go to your health food store or coop and ask if they have fragrance-free, hypoallergenic cleaning/household and personal care products, and they can usually direct you to stuff.
Look for labels that say things like, “100% fragrance-free” or “Free of dyes, perfumes or colorings,” or “Fragrance-free and hypoallergenic.” Read labels. Some “unscented” products made by the big companies actually have scent and then a masking scent added, which makes them extra toxic.
P.S. In the MCS sense, chemical-free does not mean not driving a car. I used to drive a car. I’m not able to anymore, but that’s due to Lyme. So my PCAs drive me if I need to go somewhere. But it’s pretty hard to get around these days without one, and actually if you use public transport (bus or train) you are packed in with all those other people wearing fragrance, plus the diesel and other fumes, and that is harder for visiting an MCSer, although it would be better for the environment as a whole if we all drove less. But, you do what you can. My van is a gas-guzzler because there is no such thing as a van that accommodates a wheelchair lift that is fuel efficient. 😦
Thanks for all the info, Sharon. I really appreciate it.
I do use vinegar in the laundry. I’ve found that for whatever reason, Purex laundry soap doesn’t bother me (In canada, so not sure if usa even has it?) and they do make an unscented version now, but even their fragranced one wasn’t bad. Odd. Anyway, I’d love to hear how you use the baking soda.. I usually put a little soap in the “soap” thing, then fill the bleach, softener and prewash with vinegar, then top up the soap one with vinegar. Things come out pretty smell-free.
The biggest struggle is with the dryer!! I tried to convert my family to dryer balls, but they struggle with the static. Our compromise for now is to use a tiny piece of unscented static sheet with each load. I’m okay with static, but they are not, and unless I ensure all my laundry (towels, etc) is totally separate, it’s difficult.
We have a terrible hard-water problem, and I’m interested to try peroxide to see if it helps. CLR works, but it’s NASTY stuff. Vinegar doesn’t even touch it.
Sorry, very tired, will write more tomorrow. Thanks again !!
Sharon,
Yours is the first long post that i’ve read completely through in a very long time.
I can NOT begin to imagine what you and the clients I have with MCS have to go through on a minute by minute basis just to try to survive. I have women who have to literally live in their car and risk being sick for days just to go do the simplest of things that I take for granted.
As a therapist (with fibro) I helplessly witness the profound emotional pain that comes with MCS.
I am forwarding your post to them as I know it will be of some comfort to hear what they tell me being voiced out loud by someone else who knows – not just imagines-the struggle to survive.
My heart and prayers go out to you.
Judith Westerfield
Sharon,
Really thoughtful post. The most considerate and respectful writing on MCS I’ve seen.
On an entirely different note: Last night I had a dream that you and I decided to throw a dance party. Ha! 🙂
WOW! Your post is one of those keepers- the must reads of the fragranced communities. I felt your anguish and pain because like you, I live it. I don’t have any IRL friends that I could meet with and enjoy socializing with. its the crux of the disease.
I actually lost the friendship of my god-daughters family over MCS. That one stung so deeply and the loss still is felt intensely.
I am so glad you touched on these essential oils- so many people think of them as safe and yet I know all too well how fiercely I react around the supposed *safe* snicker
You have so much guts to write a post like this- I wish I had your guts. Keep up the education as its so so important.
This is me sitting here with a hangdog look, because I know you’re right. I’ll come back and talk more later, but in the short term, this post did cause me to make a small change – in my ‘Support the blogger’ area, I used to have a note that I love BPAL oils and would like to recieve them as gifts, but I removed it after reading this post.
I have thoughts, but I also have fatigue and the need to not fuck up my sleep schedule any more than I already have.
~Kali
Thank you, Judith. When I read your comment, I became concerned that I have misled people about the severity of my MCS. It used to be much more severe than it is now. I am still on the severe end of the spectrum, but I am a lot less severe than some other people I know because I have been practicing avoidance, and been lucky, and have privilege, that a lot of other people I know don’t. That has enabled me to turn the tide somewhat.
I’ve decided I need to write a post about what it used to be like for me, because there are so many things I can do now that I couldn’t before, that I have come to take for granted, and many with MCS cannot.
I used to have a lot of EMF stuff around computer usage that is much better, and I used to not be able to open my mail without a reading box, gloves, and a mask. I used to not be able to use pens; I only used mechanical pencils, and now I can use gel pens! All sorts of things like that.
So, I am very grateful, and fortunate, that now if I avoid exposures, I am generally not reacting. And even when I do have exposures, my reactions tend to be much less severe and last for a shorter time than before.
But your comment has also inspired me to try to look up the data for an MCS housing survey we did in my community, and which I interpreted. And it is very telling about who and how people end up homeless, or living in a place that makes you sick, and how tied that is to money and gender and whether you’re single or partnered, etc.
1. Thank you. I credit studying NVC (nonviolent communication) with being able to write a post like this, which I could never have done a year ago. I still have a lot to learn, but it’s helped me a lot.
2. OMG, would love a dance party with you!
Thanks, Karyn! Smiling.
I’m really sorry about your dog-daughter’s family. That sounds like a real source of grief.
And, btw, you DO have my guts! Or, rather, you have your own guts, which are just as worthy!
Kali,
I can’t tell you how much it means to me that you took that note down. I value you and our connection so much, and I havee just not known how to broach the issue with you. And I so much did not want this post to be a source of pain for you. So, thank you, and get rest, yes. And I still owe you emails!!!
Well, like most people, I often don’t realize my privilege until someone puts a mirror before me.
I struggle with fragrance and chemical issues, when I give them thought (which admittedly I do not do as often as I should). I am sorry that I had something hurtful to you in my blog, and I hope that in the future you feel like you can approach me if I put something hurtful there again. I do my best to take it seriously when someone tells them that I’m having privilege issues!
Part of my frustration is that the same chemicals I know other people have problems with, I have trouble living without. Like fabric softener – I know it’s not good for a lot of people, but if I don’t use it, my clothing rubs so badly that I get rashes and sores. I’ve tried just using vinegar, and using vinegar and dryer balls, and neither method was nearly enough.
The perfumes…well…honestly, they’re a big boost for me mental health-wise. I struggle with feeling ugly and un-feminine and dysfunctional, and doing something like this can help me with staving off depression. As I struggle with depression, I do have to use all of my tools. I also have a blend I use to help with sleep. So while I won’t advocate using them, I do need them. And I hate that I have to try to balance my needs vs other people needs, in much the same way I hate balancing my needs vs environmental needs.
I am trying to move my household towards use of milder household substances, preferably unscented ones. Unfortunately, at this point, we’re also limited by cost, which is frustrating.
My next step towards less-toxic stuff is moving to shampoo bars that are just soap-making stuff and herbs and essential oils. I know the EOs can be problematic for poeple who have MCS, but I am at least stepping in a better direction.
~Kali
Realized I forgot to say this –
Part of why the fragrance thing gets under my skin is that I get it. I have fairly bad chemical sensitivity to a couple things, the worst being tobacco. If I don’t have an immediate asthmatic response that necessitates getting away immediately (which tends to be the norm nowadays), I end up acting like I’ve been poisoned – slurring, confused, dizzy, nauseated, weak, so on.
So having experienced that, I’m decidedly sympathetic, which makes it all the worse that I’m limited on how much I can do to avoid doing it to others.
~Kali
Hi Sharon,
I hope this doesn’t derail too much, but I wanted to comment on the NVC. I just did a quick workshop on NVC about a week ago and have been thinking about it a lot, about how to change the ways I communicate. I think it would make a very interesting blog post, if you’re still adding topics to your list (which I’m sure is quite long!).
I would like to talk about NVC some time, but you’re right, I do have a lot of other topics lined up ahead! However, if anyone is interested in a phone NVC class or practice group for people with disabilities or chronic illness, you can take one with Marlena through Bay NVC. She is wonderful. I have done the basic and deepening telephone class, and it’s made a huge difference in my life. I have made some great friends. Bay NVC’s website is http://www.baynvc.org and you can get an idea about Marlena’s class here: http://www.baynvc.org/community_calendar/view_entry.php?id=258&date=20101102
thank you for sharing your life like this. i just started my own blog here, acquiring mcs from carbon monoxide poisoning AND vocs from a gas leak while living in an ex meth-lab with my twins for almost 3 months.
i’m trying to follow, yet not follow, other folks with mcs because i don’t know what i want to ‘allow’ myself to be part of. does that make sense?
but i read your blog, and several others on here and via the CR, FB and elsewhere. only those who have mcs, can ever understand it, thus forming a family, when everyone else is completely frustrated with us.
i agree with you regarding oils and fragrance. my mom is an aromatherapist, and i’m (was) a bodyworker, etc, and always used essential oils. since we got sick, the twins and i can’t be around 99% of scents or essential oils, no matter how ‘pure’ they are.
going to my holistic doctors office is my measure of how much progress we make, as the use of essential oils are used by several practitioners in her space. it’s subtle, but headaches are a sure bet and the twins keep their masks on.
food is trickey, too. food smells, garlic and vinegar and evil for us so far. i even have to give my mother grapefruits so she can peel them, because the oil in the grapefruit skin make me sick, i can’t even go near them.
~
i think what people don’t realize too, is that when they leave their house, everything they take from their house smells like their house. their purse, their sweater, books, everything. i found the most toxic scent is deodorant. however, it’s what most people use AS their scent. i did. now, i can detect deodorant on someone 10 feet away and 3 showers ago.
regardless, i just wanted to say hi and thank you. i’d also like to ask if i might be able to use your explanation of mcs for a page on my blog, with a pingback and a thank you to this page. i think i need to have a dedicated page for mcs, and i found yours to be well said. please let me know if that’s possible.
and again, thank you for sharing.
*hug*
denise
Hi Denise,
Thanks for commenting. If it makes you feel any better, most of the time I don’t post about MCS! Or Lyme or CFIDS (although I have done several lately, and will do more soon). Most of the time I write about training my dog. It’s very doggy over here.
YES! I have this conversation all the time. When I tell someone I need to get away from them, and they inevitably tell me, “But I’m not wearing anything!” (Yes, if we only had a nickel for every time we’ve heard that. . . .) Sometimes a neat trick is to tell the person not only the type of product they’re wearing, but the actual brand name. I can’t really do that anymore, though, because I don’t know what the rest of the world smells like anymore. And, actually, by now I am just so tired of the situation, I don’t want to waste my energy on an explanation that will just go nowhere.
Oh, and yes, citrus is not only super allergenic, but the oil in citrus peels contains limonene, which is a neurotoxin. Which is why all the gazillions of products with “natural orange oil” or “natural lemon oil” or whatnot may (theoretically) be natural, but that doesn’t make them nontoxic. (After all, arsenic and mercury are naturally occurring, too.) You probably already know all this, but for the benefit of other readers who are going, “Huh? Grapefruits?”
“YES! I have this conversation all the time. When I tell someone I need to get away from them, and they inevitably tell me, “But I’m not wearing anything!” (Yes, if we only had a nickel for every time we’ve heard that. . . .) ”
What does it say about our society that this is a general problem? Why can’t people just respect that each person knows what they (and their kids, dogs, etc) need, and do as asked? This sounds far too familiar to telling someone that I need them to get away from my fear aggressive dog and they come back with “But dogs LOVE ME.” It’s disrespectful… or something. Like “You don’t know what’s best for you, but I do!”
Sorry, just thinking this through out loud!
Thank you for this info, Sharon.
I knew some of it already, but other bits are new to me.
I would certainly be interested if you were to write a post about scent-free or “instead-of-that-use-this” products or other ways to reduce my “toxin footprint” as it were.
Like so many other things, I think the idea of going completely scent-free can be really overwhelming/scary, I know it was for me when I first heard of it, but I have been trying to make small changes, one or two at a time, when I can, so this kind of info is super helpful. (for example, I have been trying to find a replacement for baby-powder and haven’t been too happy with cornstarch, I will definitely try arrowroot powder.)
I want to do what I can in this area, for accessibility for others, and also for my own (and potential future children’s) health and for environmental reasons. (I know it is a privilege that I am able to make the choice to make changes slowly, but hopefully slowly is better than not at all!)
So, yeah, I will happily read/use any info you are able to provide on this topic.
I feel like every time I look for stuff online about cleaning products I just keep seeing uses for vinegar, which is the(?) one thing *I* have some kind sensitivity to so especially vinegar-alternatives would be great, but that’s just me being selfish. *grin*
Oh, and another thing I thought worth mentioning – we’re switching over to the Arm & Hammer detergent you recommended in a comment above. It’s one of those easy switches that causes us no difficulty and doesn’t cost more than the alternatives. If you were up to it, at some point, I would LOVE to see a post about products like that. I may have some limits on what I can change, but I’m sure there are a ton of things I use without thinking about it that I could eliminate.
I know I’m pulling privilege here in asking you for this, but to be perfectly honest I get overwhelmed when I try to find the information myself.
Damn I wish I’d known citrus oils were particularly bad in terms of natural scents. They happen to be some of my favorite scents, and my new less-toxic shampoo bar has a lot of citrus oils in it. Blast it.
~Kali
Wow, having that conversation all the time…that SUCKS. At least in my world, when someone says they need to get away, they need to get away. I’m not going to grill them on it. It might be something like MCS, it might be panic attacks or PTSD, it might be so many things all of which are pretty damn personal!
I’m sorry that so many people don’t have that respect. I guess it comes with privilege. Being on the end of having PTSD that causes me to need a bit more personal space than the average person, I know I don’t want to be questioned and doubted when I say I need space. Yuck.
~Kali
Hi Kali,
I regret that I haven’t had time to respond more fully to your (and others’) wonderful responses to this (and other) post(s). I really want to, and I have just been so overwhelmed by them (in a good way). At the same time, things have been hectic, and I am sleep-deprived and literally passing out every night (where I reach the point I can’t keep my eyes open and just pass out), so I haven’t been able to put in the work to do it right. But it’s definitely on my priority list.
Let me just say that there is no privilege thing here about asking for product recommendations. MCSers are THRILLED when people ask us which products to use. It means people care about our welfare and are willing to make changes in their lives for our well-being, and we are more than happy to do that.
Also, quite honestly, it IS very confusing to try to figure out which things are safer or more tolerable and which things aren’t. Corporations have gotten savvy and put words like “natural” and “REAL [plant/fruit] extract” and even “unscented” on stuff that is actually NOT unscented or not generally MCS-safer.
Also, you’ll notice I’m saying “safER,” not “safe,” because sensitivities vary so widely, what works for one does not always work for others. So, I just give out info on what’s more likely to be safe for someone than the general corporate toxic products, but there’s no guarantee everyone will be right for everybody.
So, it’s complicated, and that’s why I want to try to make it as easy as possible for anyone interested/willing to switch products to do so, with as little stress and expense as possible.
I am definitely planning on posting a list of products, companies, catalogs, and general “how to find less toxic/MCS-safer” products tips. Usually when I do this, I do it for local people or people I know or MCSers asking for a particular type of product, so I can narrow my scope and say, “They have X at the Leverett Coop and Y at Whole Foods,” or “Here are some companies that sell FF shampoo,” etc.
Doing this nationally/internatinally and not knowing people’s budgets and product preferences — some will pay more for something that does what they really want to their hair, for example — and some just want something that does the job for the least cost.
So, I will try to compile a list of cheaper and higher end, and etc., and then everyone, feel free to ask questions. But, I just haven’t gotten to it yet. But I am deeply grateful for your response.
(And now that I realize I can reply to comments in email, I should be able to do them more timely.)
I’m finding this rather hilarious, because it’s universal for MCSers who tell someone that they have a scent/product on that’s making us sick to say, “But I’m not wearing anything!”
Like, verbatim. Like: All. The. Time. You can bank on it.
Think there’s a Waspish Wednesday post in this topic…. grin.
In fact, the Part II of the Typical Atypical Day post that I have not yet managed to finish writing (life moves too fast!) includes someone saying, “But I’m not wearing anything!” Which is one of the “typical” things of the day.
Sharon, I’m thinking about buying shampoo bars from a company and one of their shampoo bars is non-scented. I was wondering if this list of ingredients sounds MCS-safer: Saponified oils of sweet almond, organic coconut, sunflower, rice bran, castor bean, jojoba, organic palm, and expeller pressed canola; organic coconut milk; and water.
(The company is Chagrin Valley, if you’re curious, and the specific product is Coconut Milk Shampoo.) If that sounds safer, I may get a sample of the unscented one. I’d like to be able to get myself to the point where we could safely meet someday! (Though me being that ‘safe’ would probably be a temporary thing for me, as I haven’t found an alternative to fabric softener that is soft enough for my skin)
~Kali
Hi Kali, Thank you. I really appreciate your efforts. I haven’t heard of that company, and with that ingredients list, it could go either way. Some with a list of plant oils/extracts like that are really fragrancy (tho it may be “natural frangrance”) and some are more MCS-safer. So, I can’t say for sure. I do plan to try to get a list together of products, or maybe do different posts with different products. I’m fairly sure, BTW, that both NEEDS and 7th Generation make a fabric softener sheet that is nontoxic/fragrance-free. Have you tried those yet? Off the top of my head, the brands I can think of that are widely(ish) available for shampoo that are MCS-safer are Neutrogena original unscented (check that it’s the unscented one, because most of their stuff isn’t), Jason’s (any of their products), Magick Botanicals (everything but their hairspray), Stonybrook Farm (I think is the name) shampoo/conditioner.
If you were up for some retail therapy, you could call or visit NEEDS 800-634-1380 or needs.com, I think, and ask for/peruse their list of FF shampoos. You could either buy from them or see if your stores around you carry any of the products they offer. Just be search to search by fragrance-free, or ask about frag-free, because not all of their stuff is, but they know about MCS.
I am actually hoping I might contact some of the MCS-safer product companies and ask if they will donate samples for giveaways on aftergadget.com as part of MCS-awareness raising effort. But I haven’t gotten around to that yet.
Just looked thru LifeKind catalog yesterday. They have shampoo you might like, both scented and unscented. (You’d want to get unscented.) Seems like maybe similar to this kind. Lifekind.com. Don’t know how prices compare but they do sell samples.
Based on your and Kali’s comments, I’m going to dedicate a post to dryer sheets/fabric softener, and why it’s so problematic (because it’s second on my list after pesticides, of what I wish people would not use, which is probably pretty shocking to people outside the MCS world), and because you both have expressed a need for a nontoxic alternative that works.
In fact, Kali brought up an issue about it that never occurred to me before, so now I realize that this is a legitimate need, which I honestly had not realized before (because I never used it or really understood what it did.)
So, I am looking into as many as I can find. I already know of a couple, and I’m gonna keep digging.
Meanwhile, here is a freebie I found — FF dryer sheet, even says they’re good for MCSers!
http://www.budget101.com/freebies/8900-free-sample-fragrance-free-dryer-sheets.html
I haven’t tried this, myself, so I don’t know if it will work for you, but I hope it does. Please report back, if you use it! I’m hoping to get other freebies or samples for this or other things to make it easier for people to try.
I am hoping to do posts on various types of needs/products, with resources and info about what works or doesn’t or how or why or what’s cheapest, etc., as much as I’m able. It will take me a while, but I think it will be useful.
Hi Kali,
Yes, life is a balancing act between our needs and others’. It can be quite difficult. I don’t want you to suffer. I want you to have what you need to live as well as you can with your disabilities, too.
I am going to try to post info as I’m able about how to find less-toxic products, and which ones are less expensive or which ones people praise, etc.
Meanwhile, about the fabric softener, I’ve found three sources so far, and I’m looking into more.
I know people who have used 7th Generation. I trust them as a brand for something like this, in terms of them not trying to slip something toxic in. I have no idea if they work as well as what you use.
Nirvana Safe Haven is run by someone with MCS, and she sells really good quality stuff. I haven’t tried these, but it’s worth talking to her, perhaps.
And I also haven’t tried Shaklee, but I know someone who’s a distributor, and I’ve emailed him.
The last link, from Think Before You Stink is a general guide to going fragrance-free, and starts with the four most basic things, to try not to overwhelm people, which I think is good. It sounds like you might be feeling a bit overwhelmed or guilty or something. I hope you can set that aside. I agree, you are stepping in a better direction, and that is all anyone can do really — to keep trying to move in the best direction we can.
Nirvana Safe Haven — Nontoxic reusable dryer sheets
“Get Clean” Soft Fabric Fragrance-Free Dryer Sheets
7th Gen Fabric Softener Sheets
How to Go Fragrance-Free
Yes, I can see how that would be hard. Yes, looking and acting and feeling like you’ve been poisoned, that is exactly it!
I’m glad we are talking about it, and I’m really grateful and pleased that you’re interested in looking into some MCS-safer products where you are able. I think it’s good to have a public dialogue about this. You know, most people don’t give any kind of access a thought, let alone what happens when disability needs conflict, so it’s just hard. It can be tricky. There are issues in teh MCS community about MCS and service dogs, because of severe dander allergies that affect some MCSers like chemical exposures.
Hmm, maybe this is a conversation for a cross-post between us? When disabilities conflict? I have a lot of experience with this, on both sides, and as someone whose disabilities conflict internally! And I think you do, too, don’t you? I think that would be interesting. No pressure, though. (Seriously.) I know you have a lot going on. (So do I! LOL)
Well, partly it’s that people do not remotely understand what “wearing fragrance” is, because “fragrance usually = perfume” to most people, and “wearing = I put it on today/within the last couple hours,” whereas when I say “fragranced,” I mean, “soap, shampoo, conditioner, essential oils, detergent, hairspray, last week’s perm, deodorant, the cologne you wore the last time you wore that shirt,” etc., and by wearing, I mean, “The fumes are exuding from you and coming into my air space and making me sick,” I don’t mean, “You are aware that you put something on that is making me sick.”
But, yeah, with the dog or with MCS, it’s not them who suffer. If they approach your dog, after you have said, “Do NOT approach my dog, she is fear aggressive,” and your dog lunges, it’s you and your dog dealing with the stress and fallout from that, and then this person can act the victim. “You shouldn’t have that dog out on the street!”
Yes, a lot of people are sensitive to vinegar. I am, but it’s just mild now; it used to be more of an issue for me. If you have mold allergies, anything fermented can be an issue.
But you can definitely get along without vinegar! When I don’t know what someone is specifically looking for, I tend to go with the stuff that you can find pretty much anywhere and that’s not too expensive, and baking soda, vinegar, bon ami, and hydrogen peroxide fit the bill. (as does vodka if you buy a really cheap brand.)
It can be hard to balance. Some people just want what’s cheap and easy and no frills, and if you start showing them a lot of products they don’t want or need, that cost money they don’t have, they get angry. (Often, IME, men or people without much money or interest in “products.”)
On the other hand, I have run into many people — IME this has usually been class-privilged women — who are very invested in their products, and it’s not enough to have just soap, they want a facial cleanser and they want a shaving gel, etc. It’s connected to their identity, or their sense of having freedom and choices. So, in those cases I try to show them the rainbow of MCS-safer products now available.
So. . . you can’t please any of the people all of the time, or whateverthelll it is. BUT, no, it’s not selfish if you are made sick by vinegar, it’s reasonable to ask what you can use instead. What do you need done that vinegar was suggested for?
Just to throw yet another wrench in things, I’m also in Canada, which means I don’t have easy-store-access to everything that’s available widely in the US. Admittedly for me right now, cost is the biggest factor. So even “available to order from ***USWEBSITE***” isn’t doable if the product itself isn’t significantly cheaper, because of shipping costs (especially for products containing water: laundry soap, etc)
We have a whole series of challenges here, which may make immediate changes impossible or at least limited, but I appreciate SO much having the information. I can make some of the changes myself, without involving anyone else. As I mentioned, I have gone completely away from soaps for my body/hair/… other than hand soap. This works great for me, but I still haven’t abandoned my dog-shampoo for the dogs. They all hate the smell of vinegar. Hmph.
Anyway, just wanted to thank you for the info so far, and let you know that I am (And will continue to be!) trying to make my life as low-fragrance as I can.
Hi Courtenay, Yes, I thought of that. Some brands that I know are MCS-safer/nontoxic are made in Canada, so my assumption is that maybe they are more available in stores there, and you wouldn’t have to pay internet shipping? I dunno. One I know off the top of my head is Jason’s, although I think that’s one of the more expensive brands (or at least, it is in the US). But there are many household and personal care products that are made in Canada that are FF. Seems like more than are made in the US, actually. So I’m wondering if some of them might be cheaper there than here. Also, I was going to try to do some searches by google.ca. Also, there are MCS groups in Canada, who I am sure could point me or you in the right direction. I never found a notoxic, FF dog shampoo, so I make my own, and it works really well. I combine 1/3 my shampoo (which is naturally mild, etc., anyway) with 2/3 my conditioner. (My preferred brand is Unicure.) Shake vigorously. I have found the addition of the conditioner to make the big difference in having a clean, shiny, non-smelly, non-oily coat. I’m pretty sure (though not positive) that this is what Karyn does, too, with her BC guide, Thane. It comes out to the same amount of “product” (I’m not using more shampoo/conditioner than I would shampoo alone, and if you have a relatively cheap person shampoo/conditioner, then you’re not paying extra for dog shampoo). I appreciate that you keep bringing up what the issues are so that I can try to help address them.
So interesting that more are made in Canada!
Are there fairly scent-free dish soaps? Dish soap is one thing I’ve used in the past when I can’t find/get sensitive-skin-friendly soaps. It’s a bit drying, but my dogs aren’t bathed very often (couple times a year, they’re pets), so that shouldn’t be too much of a problem. I’d just use baking soda,but I find it takes a LOT of scrubbing, which is fine for me (I’m patient!) but the dogs may not be so keen on waiting around for half an hour while I scrub their fur with soda…. heh.r Maybe a new training challenge? Get the dog to bath himself? 😀
I was pretty sure 7th Generation must distribute in Canada, and it does. I found that, and a couple other brands by searching “fragrance-free dishwashing liquid” (without the quotation marks) at google.ca. I have a friend with MCS who uses 7th Gen Free & Clear dishwashing liquid for dishes and for shampoo and hand soap, etc. You can dilute it, since dishwashing liquid is made to cut grease, for hands, hair, etc. And when we had the flea alert last night, which turned out to be a false alert, we used it on Barnum (and once, when Gadget had ONE flea, as it turned out, we used it on him — because dishwashing liquid is supposed to be particularly good for smothering fleas because of the surfactants, I guess). However, because it’s so concentrated, I wouldn’t use that on its own without conditioner, unless, like you said, you only wash them twice a year. When my dogs are going into public a lot, they get washed a lot, and because they have hair instead of fur, if I don’t use conditioner, their coats get oily and smelly (and allergenic). But if that’s not an issue for you, I’d just use 7th Gen. I don’t think of it as being particularly pricey, but I don’t know how it compares with other prices in Canada. It’s a popular brand, and they might have it at your store. Nature Clean is a brand that’s made in Canada. I’ve used some of their stuff for other things, but not their dishwashing liquid. My guess is that it’s probably fine. Dakota free advertises in an MCS newsletter, but I’ve never tried it, but they seem to be offering a trial size. And there are others. I hope that helps.
Sadly the sample of dryer sheets you linked to doesn’t seem to be available anymore.
The ‘Think before you stink’ link gave me a real ‘Duh!’ moment – we use a laundromat, so I’m not sure how MCS-safer we can get our clothing and whatnot. We’re going to be switching to that unfragranced Arm & Hammer detergent, but before I invest in expensive dryersheets/fabric softener, I want to make sure it’s actually going to make a difference! If the laundromat already has my clothes too toxic to bear, I dunno how much of a difference it makes. (Yeah, cosmically it would make a difference because there would be 2 people’s worth of less toxic dryer sheets, but that isn’t a whole lot of difference, you know?)
Re: the oils in the shampoo bar I mentioned: sweet almond and coconut are the ‘smelliest’ of the oils. Sweet almond you get exposed to any time you crush almonds, so if you can tolerate them, it’s probably safe. The relationship between coconut and coconut oil is pretty similar. The other oils, if pure, have about as much scent as vegetable oil. (less pure jojoba oil apparently has a slight earthy smell, except to people with a rare gene who experience the scent as rotten fish, yuck!) So the strongest scenting element in there may actually be the coconut milk. (After you said you didn’t know, I did a little research.)
Our Bon Ami spray and dish soap arrived today; we would have gotten the powder too, but the place we ordered from was out. I’m actually really pleased with the discovery of this brand because I often have minor breathing issues after someone has used more common commercial cleaners (powders and sprays both), and can only tolerate them for VERY short amounts of time without feeling horribly ill. It’s bad enough that ever since childhood, cleaning the bathroom was something I was excused from when I lived with my parents, and I often traded off the duty for other chores when living with other people. I think my mother went through about 15 or 20 different cleaners trying to find something I could tolerate – even stuff that was enzyme based made me ill. That we might be able to get cleaners that don’t bother Kali is a nice bonus of this post of yours. I still can’t do the cleaning because of my screwy joints, but at least going in the bathroom or the kitchen after other people have cleaned won’t make me gasp!
Oh, and if you want some less-toxic hair product alternatives, I’d be happy to poke around on the long hair community forums I recently joined when I decided to keep my hair long. Off the top of my head, I know that pure aloe vera gel can be used for hair gel.
~Kali
i wasn’t able to read through the entirety of this as my spoon count was dwindling, but i wanted to thank you for writing it. ever since i ‘got sick’ as i tend to put it (and moreso realizing that it’s likely my nervous system being out of whack), i’ve been finding myself growing intolerant of numerous chemicals and scents. things i used to be able to do i can’t anymore, things i used to be able to tolerate i can’t anymore (oh axe, how my brother loves you much to my agony), and what really throws me for a loop is how much this can vary from one day to another. the other day at work i found myself gagging and coughing bc i could smell fabric softener in a cart, which was probably only on one article of clothing due to it being washed and no other associate could pick up on the scent.
i’ve mentioned on multiple occasions irl that no place will be 100% accessible, partially due to scents and chemicals present. a lot of people assume that it’s just related to autism or sensory processing disorders. so it makes me feel more… comfortable? that you point out in length why no, there’s other reasons why.
so… thank you. for putting so much energy into making sure these points are out there (and i totes agree with you on the endorsement of fragrances/perfumes through blogging about them). it makes me sad that this is the first site that i’ve come across that talks about why this is a problem in length outside of the autistic spectrum. i wish it wasn’t. but i’m still glad that it’s here and available for people when such information is clearly lacking.
oh, and before i forget, an idea to shoot out there for folks that find themselves calmed by certain scents (like i do) that wish to make them more accessible: small, handheld potpourri bags (organza’s commonly used) filled with particular kinds of loose leaf tea. a lot of potpourri suggests including essential oils, but this step isn’t really necessary for it to work, it just makes them last longer. without it you’ll have chemical-free potpourri. it can sometimes be a bit more accessible than, say, having the can of tea within reach on your desk. i mean, what if you wanted to brew it in the kitchen? then you’d have to bring it out from where your desk is!
so yeah. putting that out there. (i still haven’t made my bag. shame on me.)
Thank you, SN. Yes, I have been very pleased and surprised by the response to this post. And now I see how much more work I have to do to follow up! But, that will be a process, cuz, as you said, the spoons, and the other things to deal with (training Barnum, my health, my writing, etc.)
I hadn’t hear about fragrances WRT to autism spectrum, but as soon as you say it, it makes sense, in terms of sensory overload. I have a lot of sensory overload issues, and it does seem that a lot of people with MCS also, especially those who are very sick, have trouble tolerating noise, light, movement, etc. I have extreme difficulty focusing on one form of sensory activity (e.g., listening) if anything else is going on (movement, other talking, etc.). And I frequently refer to scents as how “loud” they are, because that’s just how it feels. If there’s too much sensory activity around me, I will sometimes just put my hands over my ears or and stick my head, eyes closed, under my arms, because I just can’t even get across the words to make it stop (or if I do, it comes out extremely rudely, like, “Make it stop!”). Oh dear.
If it’s fragrances, though, I just run away, as fast as I can.
Also, for the record, fragrances also trigger symptoms for other conditions. They can be asthma triggers, allergy triggers, seizure triggers for people with epilepsy, and more.