Your friend has MCS. For whatever reason you (rightly) believe them – you know about the petrochemical toxic world, you know about other environment caused illnesses, you know they never lie, you know life is hard and strange sometimes. You want to help but this “no chemicals near me” advice is so vague, you think it might be best to avoid your friend for their safety. Plus your friend has weird mood swings and symptoms that scare the beejeebus out of you. Don’t go. Suicide is a common cause of death for MCS. A lot of it is the crazy-making isolation and fear of going through this alone.
Imagine if you were placed in the Hole in prison because you were sick from something done to you by society’s petrochemical lifestyle. Or that you were a fugitive/refugee, being attacked by things many others do not sense. That life was pure survival based. All you sought was safety in a world that denies you are in danger. Most of your old support system is gone. Many consider you a crazy liar. People point at your mask and make jokes. Landlords and doctors (the two people whose helpyou need the most) discriminate against you. It is terrifying. Overwhelming.
One of the main questions Canaries have is “What can I do that is fun?” and another is “How do I do this all alone?” You can help with either or both. First understand that your friend is not to blame for their symptoms. If your friend had a high fever and was hallucinating, you would be kind. If your friend, when coming out from anesthesia, was belligerent, you’d not take it personally. If your friend had drugs put in their drink and started sobbing uncontrollably, you’d be concerned but not mad at them. If your friend was hit by a car and in severe pain, you’d understand why they would not want the lights on brighter. If your friend had the flu, they cancelled due to fatigue, you’d see as realistic. If your friend had dementia, you would stay calm if they repeated themselves or forgot what you just said. If your friend was allergic to bees and you wanted to go visit bee hives, you would not be angry they did not go with you. If your friend had food poisoning and kept vomiting, you would blame the food, not them. If your friend had Tourette’s, their tics and possible swearing would get to be common place. If your friend was allergic to cats, you would not visit them with 6 Siamese kittens and expect them to be happy with you.
Why do I explain MCS this way? I want you to understand that if your friend had a choice, they would not be having these symptoms. It is not fun for your friend. They are not getting any positive attention or benefit for having this. In fact they are probably punished for getting this illness by ignorant family, arrogant doctors, cruel media and lazy social workers. This illness has an incredibly high homelessness rate. Your friend is not being difficult. Your friend is asking for what they needs to be safe, like the millions of others with MCS, trying to survive day by day. While you may realize how inevitable MCS is, others do not. MS, asthma, and fibromyalgia were all considered psychological disorders once. No one today would think a child needing their inhaler during a wheezing fit was making it up due to a mental illness. (If that child was treated as if they where making it up due to mental illness, that child may end up with a mental illness, though, like PTSD.) They are not faking for attention.
All anyone with MCS gets is abusive attention, so faking this illness would be really stupid. What benefits could anyone possibly get from faking this? None. Also, it would be very hard to fake such superawareness of petrochemicals. Since your friend was not a Machivellian sociopath before getting MCS, they are not one now. Sometimes your friend may be 99% in crisis, especially if they do not have safe housing. Other times, if they have safe housing and no recent exposures and enough money for organic food, utilities and rent, they may be only 1% in crisis, perhaps a lingering vigilance about chemicals. It’s still your friend and all that has changed is that they have a neuro-endocrine break down in their body that allows everyday poisons in very small amounts to annihilate them. During an exposure the mast cells in the limbic system appear to be kindled, so the person exhibits rage and/or terror. Most disabled people have depression, grief, and anxiety about their literal life or death situation, they may not always be “happy shiny people.” Would you?
Be compassionate. They may drop off the face of the Earth for a year or ask for space. Listen to them. Their primary objective is to not die. That’s it. So is yours, but you have more working in your favor. Three Rules Appropriate response to MCS and MCS related problems: “That sucks, dude. I am sorry. I don’t know what you need, but just tell me and I’ll listen. Got any information I should read so I can understand and help better? I am not going anywhere. Our friendship will survive this. If you ever think of something you need, call me. You are important to me and I won’t abandon you.” If there are some truthful limits, make them known lightly such as “I know I am terrible with emotions, but if you need anything from the store, call me” or “I know I flake on practical things, but I always have my cell with me if you need someone to listen.” Then actually do what you said you could do. However, most people do not do this. Instead they do one or more of the following three things that make matters worse.
If you remember these three rules, you ought to be a pretty good friend. Rule number one: Do not take it personally. If your friend runs away from you when you move in for a hug, they may really need that hug, but has gotten a whiff of your recently dyed hair or dry cleaned coat. If your friend suddenly hangs up on you, their body may have been in danger and they had to move to safety. If your friend is hysterical and mean after an exposure, it’s the chemicals talking. Nothing from their subconscious, no repressed truths, it’s not them. Memorize this: “It is not about me. It is the MCS, not my friend’s fault.” If they are suffering from an exposure, your emotional needs take a backseat. That’s just life. Your friend has to deal with the nightmare of living it. The least you can do is be kind, calm and helpful at least until they say they are well enough to argue with you about whether or not the Mets stink, if Mom loved them more, or how you feel neglected. 2 seconds exposure = 2 days in bed. Honest. It really can be that bad. Expect an apology when the dust clears if they were mean and remember it. Also when safe, healthy and in control they need to treat you properly.
Rule number two: No unsolicited medical advice. Every disabled person I know hates the endless diets, supplements, books, etc forced on them by well meaning people. You do not have MCS. You have not studied it in depth. Neither Dr Oz, Oprah nor Dr Phil knows anything about MCS. Neither your yoga teacher, Reiki Master nor Priest know anything about MCS. Disabled people tend to have a lot of time to research their illness. Far more than you do. There are maybe 6 MCS experts in the world. Not only are you not one of them, you probably have never heard their names. Your friend knows more than you. Let your ego take a back seat and be their ally, not their wanna-be rescuer.
Rule number three: No unsolicited psycho-spiritual analysis. No “karma” no “God only gives us what we can handle” no “Law of Attraction” no “spiritual lessons” no “you need to just release your anger/fear/resentment/grief” no “think positive” no “you must forgive” no “God is testing your faith” no “everything happens for a reason” (unless you add that the reason is rampant disregard for health by the petrochemical industries) and no “this guru really helped me.” If anything you want to say implies that their situation is their fault and is not as serious as it is, shut up. Really. You’re hurting them deeper than you could possibly imagine. Blaming the victim or trying to “cheer them up” usually are done so the person not in crisis can feel safer, not to help the person in trauma. The former says “Good things happen to good people and bad things happen to bad people, so I will be safe” and the latter says “Shut up, you are scaring the Hell out of me and I cannot handle your pain.”
Is it your issue? If you cannot handle their pain, you may therapy to see why. Some people had experiences where they were treated poorly when ill and their bitterness makes them think other ill people should not have it any better. Others have lost a loved one to an illness and never grieved or got closure and seeing someone else close to them ill triggers those repressed, often subconscious feelings. People mean to the disabled often were told and internalized the belief that vulnerability and weakness are bad or illness only happens to bad people. For many, awareness of how unfair the world is and how corrupt our political systems are about the environment is very overwheling and frightening. With so much scary news, having living, talking proof of the unjustness of life, the effects of petrochemicals and how health care works in this culture can be shocking. It may be easier to decide they are making it up than believe the truth. The truth is pretty life altering.
Your new judgments about your friend – “he is not trying hard enough” “she brought this on herself” “she is using people” “he needs to be totally indepenent” “she could snap out of the bad attitude if she wanted to” “he should be like those inspiring disabled people that make the rest of us feel good” – show a lot about you, not your friend. If you fear their anger, how comfortable are you with your own anger? If you cannot show them compassion, can you show it to your self? If you are angry they need help, do you not ask for help and feel overburdened? If hearing about the illnesses caused by everyday things scares you away, do you keep your head in the sand about anything that challenges the status quo? If you cannot fix your friend and so you abandon your now exfriend, do you run from other ambiguious problems? Most people today are trapped in the pursuit of constant nonstop happiness which is incredibly unrealistic and the cause of much unhappiness. By searching within for the cause of your own emotional reactions to a friend with MCS, you have the chance to heal your relationship with yourself and to be part of positive environmental and compassionate change in the world.
How to Help: Offer to take their car to the shop for oil changes or repairs, be well educated about what is dangerous for your friend and supervise the mechanics. When you go grocery shopping, ask your friend for their list, since they probably are not safe in such public spaces. Ditto for if you go to the hardware store. If your friend gives you a guide for visiting, read it and refer to it before each visit. If you want one, ask them to make one for you. Do not be surprised if it changes. Often MCS progresses and your friend may become sensitized to new things or just learns in more detail what harms them. Be prepared for the unexpected. If your friend can handle Tyvek, buy some Dupont Tyvek coveralls 1414 in your size. As long as you have not dowsed yourself in perfumed lotion and hair gel, you might be able to just wear the disposable suit over your street clothes and visit.
For visiting, keep a set of clothing that your friend can tolerate separate from all your other clothing, washed only in something your friend can tolerate separately from all your other clothing and not in the same machine. Take a shower with a soap your friend says they can tolerate and put nothing else on your hair or skin. When in the car, cover yourself so no fragrances or fumes get into your hair or clothing. Remember not to chew gum. Maybe keeping the clothes at your friend’s if there is some way to bathe there would work better. Video chat, talk on the phone, send photos via email. Be your friend’s advocate at the hospital if needed. Have them give you all relevant information. Know when to call 911 and when not to. Most of the time MCS is worse in a hospital. Unless you are dealing with a broken leg or heart attack, plan ahead of time.
If you have a porch or yard with fresh air, if your friend is homeless and your family and/or landlord is cool with it, invite your friend to live or sleep there. For the yard, they may be able to sleep in their car or in an older off gassed tent. On the porch they might be able to set up a sleeping place. Long term, you could help them set up a steel shed. Ask your place of worship to make your friend their charity. Keep looking for housing they might tolerate. Drive them back from appointments like the dentist that are almost guaranteed to make them incapacitated. Have a fundraiser for your friend: spaghetti dinner, bingo, concert, plant sale, swap meet etc. MCS means a lot of remodeling. If you have a truck, tools, a dumpster, skills in construction, and/or some muscle power, you could make things far easier for your friend than they expected.
Put brochures about MCS and fragrance everywhere. If your friend is starting to get sick, get them to fresh air asap! Bring them organic food from your garden and the gardens of your friends. Open their mail and hang it someplace safe to off gas. Fill out forms for them over the phone. Let them email documents to you that they need printed. Record events like weddings, children’s plays, and other important events in your shared community for them. Make your home and body a fragrance free zone. Send e-cards like at Care2. Volunteer with the local MCS group or a national one. Cut their hair if you know how. Canaries are often starved for safe touch while perhaps being touch-phobic due to fears of petrochemicals humans wear. If appropriate for your relationship, ask if they want a foot rub or a hug. Find things you can do together. Have a picnic at a rarely used state park. Go hiking in a remote national forest. Garden organically together. Knit with organic wool. Play online games. Discuss online news or kindle books. Build furniture of glass, wood, and/or metal in a way they can tolerate. Pray, sing or chant together over the phone.
If your friend is in crisis and you are emotionally drained, do not whine about yourself, yell at or threaten them. For some reason humans do this to other humans in pain that cannot be solved instantly, as if guilt and fear will make the other person feel better and the problems will go away. Say something like “Let me rest and think about this. I am going to call you back tomorrow night at 8 with some ideas” or “I have brain freeze. I’m going to see my friend who works at the community help center later this week. I will gather information about some possible next steps. I know it feels like this will last forever, but you were feeling pretty good at the beach 2 weeks ago and we will make sure you feel that good again. I’ll email you all the news I get over the weekend then we can talk.” The definite time helps them feel secure. You didn’t blame them for an MCS caused ordeal and make them feel bad. And saying you think best when rested and need time to gather more information lets them know you are not abandoning them.
Communication & Understanding: Sometimes it is very hard for someone with MCS to hear you talk about things you are doing they loved to do but cannot. Remember, they are often in a grieving process. If you want to understand what it is like for them emotionally, write down everything you love to do, eat, visit, etc., each one on a small piece of paper. An entire family, school workers, or other group can do this together. Now if it is something that with MCS you could no longer enjoy, throw it in the recycling bin. Line dancing, Olive Garden, Sandy’s New Year’s Eve Parties, Cape Cod, reading InStyle, having your nails done, your favorite sweater, concerts in the park, your childhood doll collection, walking the dog, scrapbooking group, your career, AA meetings, church, volunteer work, bicycle riding, fine art galleries, that cafe on the corner, all your friends, motorcycles, dating, the museum, field trips with kids, mud bog races, Mommy and Me class, swimming at the Y, comic book collecting, family reunions, watch them all get thrown away.
Even when your loved one with MCS is not in crisis by having safe housing and more stable health, they still have lost almost everything that made them who they were and why they enjoyed life. They often have to grieve those missing connections to the world. Like you would not rave about how great running that last marathon felt to a former runner wh recently lost her legs, try to be tactful and considerate about the things the MCS sufferer now cannot do. Sometimes they might want to live vicariously through you and other times it might be very painfulforthem to hear. I have a term that ends any conversation topic that is triggering a lot of grief: MCS Trigger. The grief is not ignored forever, but in a friendly chat about recent life events, my friend and I usually don’t want to have me break down crying about how much my life sucks, why did this happen to me, will it ever get better, etc.
Remember (again and again) that when persons living with MCS have an exposure, it scrambles our central nervous and endocrine systems, the systems responsible for (among much more) cognition and emotion. Lack of oxygen to the brain might play part in this. We do not enjoy it. It feels scary, vulnerable, confusing, and afterwards we’re left half remembering what we said and did, often embaressed or depressed about having to live in a way that I sum up as “The world is my Rufie.” Do not expect any rational conversation from us when we have an exposure. Just be soothing and helpful. A hint is to act as if you are in the religion you say you are in. What would Jesus do, or the Buddha, or the Triple Goddess, or Kwan Yin, or Moses, or William Penn, or Marie Laveau, or Handsome Lake, or the Great Mother, or Marcus Garvey, or the Virgin Mary, or Ganesha, or the Flying Spaghetti Monster? Atheists have a lot of amazing moral guides too. Pretend you are in a functioning community. A lot of lip service is paid to the word community. You can make it a real thing.