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.
Sharon, the muse of Gadget (an all-natural dude), and Barnum (also au naturel)