Do not assume another Canary has the same needs as you do. If Paleo diet has helped you, please remember that a Canary helped by being vegan may be coming to lunch with you. Your carbon air purifier may make them sick. Their essential oils may make you sick. When we assume we make an ass out of u and me. (I learned that as a kid watching the Odd Couple from Felix Unger.) Make everything as explicit and specific as if the person was not a Canary.
Also, remember that the “cure” is unknown for MCS. We know for sure that avoidance keeps us healthy. Different people have found different ways to cope with exposures that work for them. Sadly when people find something that is helping them they tend to push it on others. I have done that. Recent convert syndrome. Something changed your life and you decide EVERYONE should do/have/think it. Yes, it is amazing when something makes you feel better and because you are a loving person you want others to feel better as well. At the same time, you must respect that you don’t know what is best for others.
That attitude is what makes most support groups unbearable for a lot of people. End your use of the words “you should” and “you ought.” Unasked for advice is rude and presumes a lot on your part.
My personal motto is “Turning sacred cows into free range aurochs.” Aurochs, a type of ox, are now extinct but you can see them on French cave walls in paintings and there is a Norse rune for the animal. Free range means they run free. When I stared PTSD recovering I had to face the fact that I had been abused. I had to face the fact that my own religious and spiritual and psychological beliefs about what a good person is and how the universe works were wrong. I had to stop blaming myself and learn to accept that the world was as scary and horrid as it was and I had no control over that. It was terrifying to release everything I thought was True. Every belief I had, I questioned, which people were very supportive of until it involved their sacred cow beliefs. (Exit many “friends.”) Then with MCS I had to face degrading doctors and healers with their own private agendas and issues that forced me to try one magic cure after another, spending lots of money on each diagnosis and its treatment. From week to week I had to wrap my brain around a new “truth” about my body and the world. In the therapy that helped me, Acceptance and Commitment Therapy (ACT) they say to hold your beliefs lightly. Not tightly. MCS can rock you from one truth to another yearly or even hourly. A bit of healthy detachment can save you money and heartbreak.
One thing you may notice when diving into the MCS world, it seems as if many Canaries are not doing much to help promote the idea that we are not insane wingnuts. (You could say I add to that myself!) Here is my take on this.
First to remember, when having a reaction to an exposure, a person’s neurological and endocrine systems are scrambled. Mood swings and cognitive losses are very common. Turning into a raving monster and being unable to count to ten is normal for me when I have a serious exposure. My personality changes drastically. Cut people slack there, like you would if someone had brain damage from a stroke or was living with bipolar disorder. It’s the neurochemistry, not the person. Of course we all have a responsibility to handle our illnesses. This is not a “Do whatever you want” free pass. But as unrealistic as it is for me to expect you to walk through walls, it is unrealistic for me to expect someone with MCS to be emotionally and cognitively stable when they have been Blitzkrieged with chemicals. Unlike an alcoholic who won’t get help, persons with MCS don’t seek this inTOXICation. I told someone it is like having Ruffies (the date rape drug) put in your water all the time by strangers. No one would seek out this horrible feeling. The mood and thought distortions are scary not fun. If someone offends you, it may be the petrochemicals talking. All Canaries share a responsibility to learn when we are inTOXICated and communicate that to others. Whether or not they understand is not in our control, but we need to warn people when we are not ourselves and apologize afterwards for anything abusive we might have said or done.
Second, this illness takes away any sense of stability people have about the whys and hows of the world. It devastates our lives on so many levels, exposes so many evil betrayals, often fills us with such fear, loneliness, anger, grief and pure shock, it is can be unbearable to live with the truth. We have been poisoned, we are still being poisoned, everyone is being poisoned, nothing is being done to stop this, no one is held accountable, and we’ve lost our former lives. We are struggling on the beginning edge of an illness’s bell curve, before the illness is accepted and understood, trying to piece together a whole new way of being while sick often with very little support. Add to this the very real fear of homelessness, poverty, isolation and death (most likely in an E/R situation where well meaning people do not know that they are killing you). Top it off with some doctors and others thinking we are lying (why would we make this Hell up?) and that even though the ADA includes us, very few agencies will give us reasonable accommodation. It is an almost intolerable situation. We do have a high suicide rate. (I am not encouraging you to add to that. We need you.)
Humans must make meaning of life or we go insane. The meaning we choose is rather irrelevant. What is the sane way to live knowing we are being knowingly and willing harmed by people in power and at the moment we have no protection and very little support? If it is to believe in Hellfire and brimstone, angel cleanses, UFOs, past lives or zombies who will rescue us, maybe that is what some of us have to do. I find it hard to listen to myself, as it usually doesn’t make much sense to me. But when you have this illness, nothing makes sense half the time. It isn’t fair, it isn’t right, and it isn’t logical for a species to do this to itself. The situation is crazy making. People cling to whatever gets them through the night. These are hard times. In hard times people grasp at anything that helps. Whether or not you think it is right or wrong, if it doesn’t hurt anyone or is not imposed on anyone, what’s the harm? I often have been known to say “I don’t care what anyone thinks, I care about what they do.” Asatru, the native religion of Icelanders and Scandinavia, has a saying “We are our deeds.” Even if what someone thinks drives you into a raging fit, if they are truly helpful with their actions and stay silent, focus on that.
However, if someone is forcing on me their belief system as if it is a fact while doing deeds with me, I leave or they do. It is disrespectful to push your views on others. Just like one of my relationship rules is “no medical advice,” another is “no dogmas.” If someone has facts, I want to know them. Feelings and opinions I usually do not want to know because they rarely help. I do not allow anyone to bring their religious or spiritual cosmology into my life. If they cannot respect that, they have to go. (One MCS organization had in their mission statement to not promote atheism. I wouldn’t work them because I don’t see how belief in God is related to MCS. If it said to not promote race mixing or the Irish, it is easier perhaps to see the discrimination.)
Also just because someone is a Canary doesn’t mean they know anything. I have been given terrible advice by long term Canaries whom I assumed were up to date on the information about MCS. They only knew what worked for them after 20 years of expensive trial and error – and then tried to push it on me.
This is why respect is important. If a Canary says they have bleeding sores on their tongue do not tell them they cannot have that as a symptom. If a Canary says that fresh flowers make them dizzy, believe them. If a Canary says that they cannot afford to eat organic, do not beat them up. This is a terrifying illness that leaves us very isolated. We get so little respect as it is, let’s respect each other. We are a diverse group. All we have in common is MCS.
I suggest for Canaries working together that you have a rule: No religion, no spirituality, no cosmological dogma of any kind allowed unless that is the specific focus of your group. Or you WILL drive others away. I promise you that. Many of us have been abused by religions. And frankly hearing about your divine relation that got you through a bad exposure where God told you XYZ only distracts from the group’s focus. I know that I have left support groups because of one person repeatedly saying “The Lord has great plans for you,” thus sidetracking the focus. I could have said “Lord Ganesha?” but I don’t need huge theological battles when trying to figure out how to get safely home from a dental cleaning. When with Canaries, as with all people, keep your dogma to yourself unless asked.
I have also left support groups, usually anything based on the 12 steps, because I just found people parroting slogans that helped them and projecting their issues on me. Even if I was there once and said nothing, someone arrogantly would tell in great detail what all my “issues” were and how to solve them. I actually never spoke at any 12 step related meeting I accidentally attended by mistake, but I always got an earful of bad advice based on their lives, not mine, with a bucket of shame. It may have worked for them, but I am not them. It is never acceptable to offer psychological advice or opinions to anyone who isn’t asking. I found early on in the Green Canary yahoo group that strangers would psychoanalyze me and give the most insulting “help” for problems I did not have. It’s just their unresolved issues out of left field. The worst is when the person then offers to “help” you and does not understand that No Means No. Religious people often abuse others in support groups this way as well.
I have compassion for how hard it is to live with this illness and make sense of this cruel situation and I expect that no one tell me anything about God, my soul, the Universe or energy fields (unless they are EMFs). So do not let the vast range of unusual beliefs you see in the MCS community put you off, but do be careful of believing anything you read on a blog (including mine!) or hear at a support group. In that diversity you will probably find a few people you do agree with who can be of spiritual help for your needs and beliefs.
The only thing Canaries have in common is MCS. Remember that. Don’t let fear push you into extreme new ideas without first wearing your critical thinking cap. I joke, “It is not that Canaries are crazy, it’s that all humans are crazy.” In this topsy-turvy phase of your life do not make rash decisions based on panic.
The same rule applies to politics, unless it is about environmental illness and health issues. The focus of a MCS group is MCS. Politics about pesticides, fragrance free zones, disability aid cuts and safe housing are related. When it comes to poisoning by petrochemicals we know a lot. How this happened, when it happened, why it happened and who did it rather clear. Now that we are living with the consequences of decisions in which we had no say, stay with the facts, not emotional opinions, or people will be driven away. Campaigns to support or defeat politics that affect Canaries make sense. MCS affects everyone, not just those sharing your POV.
And while sharing what has helped your health is often appreciated, do not expect others to do what you say and do not tell them what “should do.” You are not them. Respect their body’s wisdom and also their financial restrictions. Remember there is no cure. Do not add to the shame many disabled people feel for being needy and sick. It is not their fault and you do not know what is best for them. Icarus, a radical mental health group, has the slogan “Friendship is the best medicine.” We call all practice that medicine!
I personally have found that having MCS is not enough to form a friendship.
Peer counseling via phone has worked well for me. Each person gets a set amount of time to talk about whatever they want without the other person trying to fix it, give advice, talk about a similar event in their lives, or judging what you “should” do/feel/think. They deeply witness your pain and feelings. When stating your feelings and situations out loud in an uncensored and confidential environment without fear of feedback, you often can reach some amazing solutions. This is not a dialogue. It is two people getting a chance to have a monologue of all the things they feel they must keep inside because no one else gets it, likes it, or is truly helpful. Plus it helps you keep from burning out your other friends. (See Resources for information.)
Another very important thing I have heard from therapists, doctors and healers that groups where people do nothing but whine and complain tends to make people feel worse. This is tricky. You need to be real. No one should be made to put of a fake cheery face or keep a stiff upper lip. We often have to do that with everyone else in our lives to get some “help.” This is where people ought to understand your pain. The members must feel it is a safe place emotionally to feel whatever they feel and not be censored, while making sure it does not become a drain. Compassionate support moves people forward. Staying stuck in a bitch fest does not.
The best help is to have the group focus on solutions.
One group has one person say what they are struggling with and they brainstorm for ideas and connections to help. Another has a topic per meeting. One could be safe cleaning recipes, then one about EMF protection, and then one about detoxification baths. Or the focus of the group could be on educating the public, giving presentations to hospitals, schools, and the general public. People in the group may be mentors similar to12 step sponsors, a person who has lived with MCS long enough to have some stability that is paired with a new member. Others may have peer counseling between members.
Be very realistic. Underestimate yourselves at first. That first flush of excitement fades fast. Health concerns suddenly remove a key player. People get bored. Cliques form over what the priorities are. Some people burn out and are resentful; others feel pressured to do more than they want; and others feel that they are given no power and their ideas are shot down by the “in” group.
Some people are task people and some are process people. The task people usually feel slowed down by the process people. I hate meetings. (Activist Starhawk writes that doing needle point in frustrating, long meetings is very satisfying.) The process people feel unheard by the task people. Groups need to ebb and flow with both the task and the process. Groups have life cycles. By having small achievable goals, people can keep momentum and see results. That satisfaction causes good morale. People want to join a winning team. My Mom says “Go where the energy is.” Who is actually making a difference? Who is talking about making a difference?
Also where can a MCS group MEET? Safe space is rare and no one will protect our meeting place if we are not there 24/7. You could show up and some other group using the room wore perfumes. (I call them pukefumes.) The cleaning staff may have thought nontoxic means Clorox. Most people without MCS cannot imagine what we have to avoid. It’s overwhelming at first when it’s affecting you. For someone who doesn’t react as strongly to poisons (yet), because their life is not MCS focused, they rarely can accommodate our needs. Maybe conference calls or Skype would work better.
Online groups tend to have people show up when in crisis. I find them to be less supportive and more terrifying. People doing well are living life, not online searching for help. If you are already hysterical or suicidal, online groups often reinforce that. The people with the answers you need are not there usually. You also have no idea with whom you are talking. They could be lying about anything. There are often predators trying to sell snake oil because they have a desperate audience. The person may pose as someone with MCS. Online anyone can be anyone. It is not safe unless it is closed group who have met in person enough to trust each other. Also studies show that healthy sane humans will stop bullying someone if they see the person suffer. There is a natural stop instinct that kicks in. Online bullying and flaming is very easy because the person cannot see the human they are harming so the instinct to stop never appears. (People who do not ever have this instinct are typically sociopathic.)
If you are not familiar with group facilitation and conflict transformation, please become so before the group forms. Many people are too “nice” and let disruption continue which drives members away. One person can dominate and ruin a group’s success. Watch for secret factions, gossip, scapegoating, and all the other human cruelties to other humans. Fake community is where nobody disagrees. A real one survives a disagreement. If you are not trained in conflict transformation, your group will be a fake community. Not until a major conflict has been resolved in a satisfactory manner for all members is a group truly cemented. Conflict will happen. It is a chance for creative change, but most of us do not have any training in that field, being taught instead to go to extremes of passive or aggressive when in conflict. We are in a debate culture, not a discussion culture, taught to compete not cooperate. So working together is hard. Very few of us have healthy group skills. Acknowledge that. It is normal to be frustrated when learning.
Rules of conduct are important. If no one knows what is acceptable and what the group process is, they will feel afraid and lost. (And get in trouble and feel awful and leave. That is not supportive.) Have your rules be overtly stated. A mission statement, meeting format, agendas, decision making process, conflict transformation process, expectations of members and more need to be in writing and an online format for those unable to be near ink. (See Resources.)
When I was misdiagnosed with fibromyalgia I found many in-person FM support groups in my area. However none of the groups still existed except on abandoned pages online. Many nonprofit disability agencies (and sexual assault, rape, and many other life and death situations) never update their website. (Doctors do this, too.) I’d call and ask about the FM group and the receptionists would be baffled. Sometimes the agency does update their website but a referral page or organization never checks their links. Many MCS websites have links I get excited about because I finally found an answer to a problem and bammo, dead end. (This is why as long as I am able to do this site, I will check links twice a year.)
From my former life in nonprofit work, I know that many times the website is built by an AmeriCorps*VISTA. I was a VISTA. It is like the Peace Corps but in the US. You serve your nation and community in voluntary poverty for one year, have health care, get some money for student loan payback, and you don’t have to promise to kill people. The government is threatening to end funding this but we need it. I swear to you, if it were not for the AmeriCorps program, many social services would fall apart. When the VISTAs finish their service, the projects that they did, which tend to be “young people skills” like web design, often fall apart because no one on staff knows how to change the webpage and it is not in anyone’s job description. As they are all doing 10 jobs for the pay of an afterschool job, it’s not on the top of their to-do list.
The groups started by persons with MCS, like FM, end quickly because it’s hard for sick people to run an organization. With great hope and intentions, plans are set up but the follow through is iffy. Since you have MCS and understand that some days brushing your teeth is too hard, I am sure you can relate. Cut yourself and other Canaries some slack. We have a serious chronic illness before the formal recognition comes. Plus there is very little known aside from what you do know: People, usually after an extreme chemical poisoning or long term smaller ones that create a massive toxic load, can end up with no defense to anything synthetic or petrochemical and the symptoms are anything possible. Beyond that, it’s all hypotheses. To organize support groups or advocacy groups in that state often when homeless or confined to one room is daunting.