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Birds of a Feather The friends that stay and those you get later are REAL. Trust me on this. They may not have MCS but they probably will understand the difficulties of the health care system, insurance, environmental poisons, and/or being disabled and the money and emotional problems that come with it. Many of them probably will have other invisible disabilities. Why? They understand ending a phone call with “Got to get in bed NOW!” CLICK and have a lot of free time. Of your old friends, those who do stay are your real friends. You can be sure of this. Isn’t it nice to finally know who truly loves you? Visitors and Communication Friends normally have no clue how to not harm someone with MCS, just like you probably had no clue before you got MCS. Fragrance free? What does that even mean? See the links on the Resources Page about visiting. Others with MCS have done the work for you. Create a form email of your own to send to anyone coming to visit about exactly what they can and cannot have on or with them. Have specific information for friends who want to see you. If they want to write you, have prepared what inks and papers are best for you if you need specific ones. Tell them if email or phone would be best. If you have insomnia, friends in other time zones can be a cure for the midnight blues. If you have EMF reactions, you probably will not be hanging out on facebook and tweeting all day. For some reason people get incredibly offended when you leave online social networks, so tell them in advance you did not defriend them in real life. Many online friends are not real friends and will disappear when they have to do more than type one line to 683 people. Sometimes people might discuss things they are doing that you used to do and no longer can. It can hurt. I loved books. Hearing about books now that I am ink intolerant is very painful for me. I say to my bibliophile friends “MCS trigger”and they know to stop discussing books. I explained it this way: If I used to be a runner and lost my legs, having someone tell me about the joy of the marathon they ran may remind me of what I have lost. That is easy to understand. Your Allies List Have a list of people you know and when you should call them. Everyone had their strengths and weaknesses. Your eternally chipper friend and your angry educated friend serve two different roles. There are those who are good with emotional support and those who can provide material assistance. Get it straight. Also know the limits of the relationship. Some people you can call at 4 am and others you can leave VM at their office and expect a call back within the month. Some people want to have a bitch fest and other people take your mind off things by rambling about a Tv show. Have the list by the phone so you don’t call the wrong person for the wrong support. Helping Those who Want to Help You When people say, and they will, “I just wish there was something I could do to help!” this is a great chance to see if they mean it. Hand them a pamphlet or send them a good article about the disgusting truth of fragrances and then say, “You can do something. Do not use anything with fragrance so I and others like me can be safer in the world – and so you and your loved ones do not get this.” Often this shocks people. They didn’t really want to DO anything. However, we have found the people who really love you will change. Those who take responsibility for their complicity in the everyday poisoning of society are the ones who love you. Like you possibly were once, they probably don’t know about all this toxic stuff. Move on to pesticides and VOCs and the rest as they catch on. Don’t expect them to be 100% nontoxic, but do expect them to really make an effort. Actions speak louder than words. Within a few years expect to know who your real friends are and be grateful. You have to throw out anything toxic – and that includes “friends.” Friends will make rather simple changes in their lives so they do not harm you. Another answer I give when asked “What can I do?” is “Don’t change the channel.” What does that mean? When ads come on TV about abused animals, most people cannot bear to watch so they change the channel. I know that for many people who love me, my life is often unbearably painful to hear about or witness. So I ask that they do not abandon me for having a tragedy that they cannot fix singlehandedly and will probably always make my life much harder than others. The image of the pelican covered in oil after BP destroyed the Gulf of Mexico was so hard for me to look at, I refused to. One day I realized I am that pelican. It terrified me so I asked some of my friends who were asking what I needed to not change the channel. When trapped in a coal mine, it is less scary when you have someone soothing on the phone. Do not call any drama worry warts when in crisis. They will add to your fear. Friends could feel awkward knowing a sick person and do not know how to act around you. They might have a lot of shame for randomly having what you now do not have, so they avoid you. I see this guilt in many rich liberals. Luckily bankruptcy is very common these days, so class and money may be less of a barrier than it once was for persons who lose everything to medical hardships. I have found that being honest about money and accessibility issues helps everyone feel more at ease. Humor helps. Get it out there so people, including you, can stop the uncomfortable tiptoeing. Saving Yourself from Wanna-Be Saviors Some friends will want to rescue you which is a major set up for failure which they may take out on you later. This is where my disabled friends and I complain about well meaning temporarily-able-bodied (TABs) people. (Most people get sick, so their able bodied status is temporary.) Your want-to-be hero reads one article and demands you try this miracle diet, supplement, cleanse, doctor, meditation, etc. Persons with fibromyalgia suffer from TABs rudely and patronizingly crossing this social boundary more than most disabled people, as there are more scams on the market for FM than anything else. MCS being so mysterious, there are a lot less snake oil sales men offering “cures,” but well meaning TABS will probably give more conflicting and faddish diet advice than you thought possible. They feel powerless and want to help. Being told that there is no magic cure you need to add to your life but a lot that needs to be removed from your life scares them. Now I tell people straight out that no medical advice is allowed. They rarely listen. I am learning I have to preplan how much to disclose for my own good. Depending on how much I trust them, I say a variation of, “If there was a treatment or cure that worked, the MCS community would know about it. We are neither stupid nor lazy. We live with this all the time and do what is known to help us as individuals, as we are all very different. We know more about this than you. I do not give you advice about your plumbing because I am not a plumber, so please do not give me health advice for Canaries. I find it demeaning, as if I cannot take care of myself. Also there are many ways you could help me based on what I, not an article in a bad magazine, say, so please trust me as the expert. If you are waiting for a cure before we can be friends again, we will never be friends, so you have to accept me as I am and respect that I know what I need for my health. You can help me with what I know I need.” If they are my friend I say this and if they refuse to trust me, then they go in a different group: The semi-friends who mean well but cause much pain by ignoring my reality because they don’t like it. The ones who say they know there is a cure and I’ll find are the most hopelessly in denial to protect themselves from their own pain and fear about MCS’s message. With semi-friends, if I need the person but they cannot understand what is happening to you and have tons of “helpful” insulting advice that hurts me deeply, I finally understand why it is best to thank them and if necessary lie (which goes against my past ethics). That way I don’t have to fight with them about their arrogant ignorance and can still have them “love” me. I read of how a woman with cancer’s therapist told her to say thank you and throw away whatever unasked for article, book, diet plan, supplement, psychoanalysis, theory, spiritual tract her “friends” imposed upon her immediately. My old physical therapist suggests to all her patients with chronic illnesses to say thank you and change the subject asap. These semi-friends don’t mean to be condescending and treat you like a crazy idiot. If you point it out, they often get defensive. Sometimes you’re too tired or dependent on the person to be allowed to tell the truth. Many people because of their own psychological issues are incapable of being truly there for someone in such an extreme situation as MCS. Semi-friends, if you pretend to agree with their worthless advice and then change the subject, can still be part of your support team, just not emotionally. My semi-friends do not understand the emotional and cognitive powerlessness when I have an exposure. “The world is my Rufie.” They still do not get it. “Emotions and thoughts are created by neurological impulses and hormones/chemicals in the endocrine system. It is like I had 15 beers and am near fatal alcohol poisoning, how much sense would you make and how kind would you be?” I have no control of the emotions and thoughts I have. Friends and allies need to trust me to know what is happening to my body. As much as they think they understand this, semi-friends still treat me as if I am not inTOXICated. To protect them from the emotional and cognitive symptoms they neither comprehend nor accept, I tell them all I am doing whatever their advice was so no one, including me, gets hurt. I have never lied before but I am seeing there are new rules. The few friends who understand MCS well enough to not psychoanalyze me when under the influence or give pep talks/ shaming lectures (the two overlap a lot!) on how I need to change are the very very few ones I call when I have an exposure. The others would get hurt, blame me, leave – and that would cause another loss from MCS, even more painfully during when I am most sick. I am tired of losing so much to this illness. Not everyone can be a good deep witness of where I am right now but when I feel better those semi-friends are necessary for non-emotional support, like political campaigns we do, hobbies we have in common, shared spiritual worship, material help and much more. Semi-friends bring much goodness in my life if I control how and when they are in my life because I know me and MCS better than they do. I just never would call one when symptom-possessed and suicidally sobbing, mast cells in my limbic system overstimulated. I realize I live in a very different world than most people can even imagine. I know things they cannot imagine, like what food dye tastes like and that humans are a species that is possibly doomed to die from its own mistakes, denial, apathy and arrogance. It is one thing to ignore a water quality report; it’s another to ignore a friend dying in front of you. As my PCP says about her patients with MCS to others, “If the chemicals you choose to have on your home and on your skin and in your body do this to them, image what they are doing to you but you don’t know it yet?” Even environmentalists often are not strong enough to go where MCS takes me. Our culture of emotional fascism demands happy happy joy joy. Knowing when to disclose my feelings and truth and when not to is now a survival issue. Being a very open, honest person who once thought that I would be protected if I told the truth and deeply believed that if I was good to others they’d treat me the same way, having to learn to go “undercover” is hard for me. I learned that when I am sick it is best to only disclose my symptoms or feelings to people if it will benefit me. I don’t have the energy to make them respect my boundaries. I just try to stay invisible and safe until it passes and I am safe. It’s a MCS thing, they simply couldn’t understand. It’s up to me to protect the semi-friendships from that truth and myself from semi-friends. True Love Means Saying “I am Sorry” Remember to apologize if you said anything nasty when exposed. Yes, it wasn’t “you” but it makes people feel better. I truly do feel terrible that they were hurt. Saying I am sorry might help ease their pain. I am very sorry they were in the line of fire of the chemically addled brain. It’s not my fault my limbic system is under attack, but it is not theirs either. MCS hurts me so much, if saying I am sorry for how it hurts someone else will ease the damage caused by this uncontrollable illness for someone, then I want them to feel better and I say it. If you say I am sorry they might soften enough to remember you are normally a good, kind person and that you have a very scary illness. They might even say “I am sorry you have to deal with this and I know it is not in your control and thank you for acknowledging my feelings.” My friends with bipolar disorder do call me sometimes to apologize for things they did when angry manic or numbly depressed. I know that it isn’t in their control, so while it is nice, I make sure they never feel that I expect this of them. Their lives are hard enough, why shame them for an illness they didn’t want? My best friend is in PTSD recovery. I know when it is the PTSD lashing out and when it is him here and now. As much as the PTSD wants to drive me away, I won’t. Also I refuse to engage with the PTSD since I cannot win. This friendship will outlast his struggles with PTSD. My personal experiences have taught me how to seperate what is in someone’s control from what isn’t, what to hold them accountable for and what to not throw in their faces. My family, especially my father due to the adulteress he left me for that controls his relationship with me, and some of my “friends” are unable to do, this much less do it compassionately. These people I will never be able to be good enough for because of their own problems no matter how much I apologize and beret myself for their pleasure. Figuring out when an apology will mend a relationship or just give the person ammo to use against you is hard. Saying “I’m sorry” is seen as being weak in this culture of power-over. It’s very strange and sad. It feels weird to me to have to take responsibility for what my body says and does when I am exposed and have a black out and am controlled by chemicals. If I was intentionally huffing glue and being crazy, it would be easier. To apologize for things I would never do normally can humiliating if it is to people who are cruel to me normally. It is one reason I isolate. If I am protected from the MCS doing anything that harms my relationships, I don’t have to deal with the shame some people like my father and his wife throw at me anyway. While apologies to those who are loving and honest feel good, those to who historically continue to abuse me do not. Some apologies are for survival and some are because I truly love the person. As a pathological truth teller (LOL) these have been hard lessons to learn. Being in a very misunderstood, disabled and discriminated against minority changes the rules of survival. How to stay alive and keep your ethics and dignity is a struggle for most oppressed people. Self compassion helps. When You Cannot Relate to Your Friends’ Problems It may be hard to have compassion for your friends’ problems now. You’ve got no safe housing and they are worried about a bad hair day. You’re struggling to get social security and they are struggling to decide what color to paint their house. While you try to find a way to get safely in and out of the grocery store, they are arguing with their spouse about which Thai restaurant to attend for dinner. You cannot safely see your child’s school play and they are complaining about taking their children to Chucky Cheese birthday parties. It may suddenly feel like they are the luckiest and whiniest people in the world or it may break your heart to hear about your former life, where your friends still meet to play poker, shop til they drop in groups, hang out in “your” coffee shop, or continue having weekly movie night or Bible study. Sometimes I say to my closest friends, “I am feeling a lot of envy for your problem right now and am scared I am going to lash out at you and I do not want to do that.” Just lay it on the table. Some people can handle that but many cannot. Very few humans are used to honest relationships. However, some of them have been in enough life and death situations and/or know there is a lot of horror they cannot demand go away, and they are loving and helpful. In fact those friends and I make the distinction between third world problems and first world problems. We state before venting which category it falls under. Third world is life and death; first world is debt, annoying relationships, bad jobs, and lack of anything fun to do. These code words help a lot. A paramedic friend who had just returned from Haiti said she was having a first world problem at home: they needed anew septic system. She knew that she was lucky to have this problem compared to the people in Haiti. Another friend might complain about the boredom and lack of health care from her job, while acknowledging in the big picture that it is a currently typical young white American educated woman’s normal problem. I feel much more validated this way. What is interesting is that some days it is fun for me to try to solve their problems which now seem so incredibly easy! I have a lot of hard earned wisdom to offer. What I have been through also gave me more compassion. I can understand their hardest problems which their other friends cannot. Other days it makes me laugh to have such normal conversations. Hearing their daily life activities is refreshing some days. But be honest with yourself and, if appropriate, with them about what you can handle at that moment. If you are recovering from an exposure and cannot form nouns or just were attacked due to being homeless or had a doctor insult you or ran out of food stamps, be real about how much you can be there for them at that time. Normal well adjusted people will respect your needs and honesty. Otherwise you may take out on them your misplaced anger. This protection of them is sometimes not understood as they covertly demand you not have MCS symptoms and/or your feelings. This is when I have learned to lie. If the person cannot hear me, lie and say what they want to hear and find an excuse to get away to safety. Although I wish truth was acceptable, it often is not. Decide how much energy you have to take on someone’s personalized projections, ignorance and anger that you are not how they want you to be due to circumstances you cannot control. I remind myself of the time I organized a meeting and a woman in a wheelchair attended and the place was not wheelchair accessible. Humans don’t think about things until they directly affect us. Compassion is necessary. MCS has a harsh learning curve, for you and your community. Call them when not in crisis and ask about their lives. Friendship is a two way street and their pain is real. Sometimes I am jealous of their problems but then I remember how real the drama is for them like it once was for me and I can be more wise. A friend taught me to zone out and just smile. Most people just need to talk about themselves AT someone, so if you can be wise and know it’s just what humans do – struggle with problems and take it all as a life or death issue when it isn’t – you can zone out and let them rant without hearing their words. My friend, age 33, with two small children and once a thriving career is not disabled, but her husband now severely is. They lost everything and she is his sole caretaker for life due to lack of social services and even though the state of Ohio keeps telling her to abandon him at a nursing home and never return so she won’t have to pay for it, she wants him cared for well and at home with his children. Very few of her or his family members support her in this act of kindness. Their old friends shun her because they feel awkward. So she smiles and nods and zones out and never argues with anyone since she has no energy. People seem to like her if she is protecting them from reality. By staying numb and distant, she can have some semi-friends. As she says “I was ignorant about how good I had it once, too.” I say that to myself a lot when being talked at about things that don’t matter in the big picture but feel as if they do to the person and try zone with a fake smile on my face. This friend enjoyed working the customer complaints desk at work, though, never flustered by their rage, only amused, so she’s mastered the fake passive aggressive concern for others that makes them like and thus help her! Being an amazing yoga teacher working with flakes also helped her master the smile and nod zone out as well, which makes her appear to be enlightened to newbie New Age Buddhists! As I try to learn this dissociated false niceness, she is my sensei, LOL. Meeting New People Poor people are often stuck in toxic jobs that injure them. If it isn’t MCS they know about, they know about cancer, asthma, fibromyalgia, Lyme, Lupus, autism, and all the other modern common illnesses, and so they will probably have their own horror story about a loved one made ill or dead by what exposures harm you – and the lack of decent health care and the poverty and mental anguish this caused. People who have yet to be touched by disability and its accompanying poverty, isolation and societal shaming may be worse than useless. You have to feel it out, but I must say I am surprised at how no one I know or meet thinks MCS could be fake aside from doctors and the corporate industrial financial interests. It doesn’t mean these sympathetic people understand MCS, will respect what I need or even be nice to me. Often times they are so grateful to have someone to vent to about their own experiences with environmental illness like their brother who hasn’t been able to breathe without an oxygen tank since working at that factory they just talk endlessly about their loss. Sometimes I like knowing I am not alone and giving them the rare safe place to grieve. (This culture hates grief and will do all it can to repress anyone releasing it. Now it is a pathology in the DSM-5.) Other times instead of hearing their problems I wish they’d join in on some environmental and legal solutions and/or offer help. Someone recently told me that most people currently are in such severe crisis they have nothing to offer anyone else. It’s not personal. There is no one well and stable enough in any type of normal community to care for the sick and poor. Understanding MCS intellectually and being able to handle it up close and personal are two very different things. I understand what happened at Hiroshima; I would not want to be there 10 seconds after the bomb fell. I’d fall apart.