This is a real DIY illness. You have got to be your own DIY emotional support team on top of doctor, lawyer, social worker, advocate, and patient. I joke that I feel like a scientist endless experimenting on myself. But it makes me cry. If I am not kind to myself right now, I will have no kindness in my life. I have to be my own therapist and pep squad and spiritual guide.
At the risk of sounding totally arrogant, I think of people like Nelson Mandala, Bradley Manning, and Rachael Carson. There are many oppressed people who faced/face horrible conditions and in spite of all the people who did/do not care or actively tried/try to harm them, stayed/stay the course and saved/save lives and helped/help bring justice into the world. I pray to them. I made a shrine to the ancestors of all forms of peace and justice, hundreds of names, from whom to ask for guidance, wisdom, strength, courage and protection. Who more than Ghandi, Dr Rev King and Dorothy Day to ask?
Therapy is tricky for the same reason all of MCS life is tricky: Their offices are toxic cesspools. You cannot become mentally more stable when your legs are giving out under you and you have vomited. Some therapists will come to your home or have sessions over the phone, but very few insurance companies will pay for that. I cannot be understood in my mask very easily, so I wouldn’t be able to wear one during therapy. Nor could I touch their furniture without getting hives. The stress of physically surviving therapy session negates for me any benefit.
Make sure your therapist believes in MCS. Some have been trained to pretend they agree with you, then steer you to believe it is a psychological issue and encourage exposures to prove it is “all in your head.” No one on record has been “cured” from this, but all on record did get sick. Multiple Chemical Sensitivity: A Survival Guide by Pamela Reed Gibson PhD has an entire chapter for therapists to read which is quite good.
Peer counseling via phone has worked well for me, because I found someone wonderful who knows how to do it right. 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 from burning out your friends. (See Resources.)
Self Help that Helps
A lot Canaries garden organically, often with permaculture techniques. They can grow food and herbs they need while saving money, getting exercise and being out of the nest. However, some Canaries develop terrible allergies and hay fever.
Some study herbalism or holistic healing techniques.
Others take classes online to still be involved in the learning community. They need not be academic or for credit. (See Resources.)
Many create works of art, from songs to paintings to stories. Art for art’s sake is what humans do. It’s part of our species uniqueness, like our relationship with fire. All humans are artists until they are told otherwise. Ignore those people, especially when it is your own self talk! A lot of feelings can be worked out in an art journal. Please see the section on safe art supplies.
Religion and spirituality are often sources of strength, although some adjustments in faith may happen first. As most religions do not have services in sanctuaries Canaries can enter safely, often they follow a solitary path. I do my devotional practices with someone 2000 miles away via telephone. One of Mom’s old churches has outdoor services that she can attend in someone’s yard or a park, specifically because they loved her as a Priest that much. Prayer, meditation, reading, and worship become key supports. Recordings of meditations, inspirational books and daily practices can be of great support.
A few create ceremonies to mark the changes in their lives. A name change, a grieving letting go ritual, an embracing help spell: Changes in individual and societal lives seem to have to be ceremonially acknowledged or they feel unfinished. We do this with marriages, graduations, winning games, funerals, and holidays and statues commemorating places, deeds, persons and times of great pain and great heroics. There are few ceremonies for being raped, for returning home from war with a TBI, for living through a flood, for divorce, for foreclosure, for chronic illness. We need to invent rituals that meet the needs of the world we actually live in today. MCS is a huge change and ritual acknowledgement of this can help.
Some hike, snowshoe, canoe or otherwise engage in outdoor activities when they have located a safe place.
Activism is a very common practice for maintaining emotional health.
Animal companions are very important to many Canaries. However, many Canaries develop allergies or become too weak to care for them and lose their animal companions. If Canaries can have an animal companion, they have a living body to touch and see, something many Canaries go weeks without experiencing. Talking to someone of any species with eyes is often better than a phone call with a disembodied human voice, according to some psychologists. Please take into account vet bills, having to walk a dog, tripping over cats, bunny proofing your home’s electrical wiring, cleaning water tanks, shopping for pet food and more before you decide to add an animal to your family. It is not fair to the animal if you cannot care for him or her. Never give someone an animal as a gift who did not request it! (I volunteered at shelters.)
Music emotionally supports many Canaries. The author of Riding the Waves, a book about electromagnetic field sensitivity, finds that a certain beat helps her handle EMFs. It is one commonly found in hard rock and older heavy metal. Others concur and have found that hard beat in some techno dance music. I would be interested to learn more about this rhythm, as different rhythms have been used in healing for eons. Your soothing music may be New Age waterfalls with synthesizer chimes and monks chanting or it may be gansta rap and ambient rave. There is no right music.
Many sew and build household goods. Some Canaries have cottage industries creating things that they needed and other Canaries or people who do not want to become Canaries need. As Canaries cannot be in craft sales, I hope someday we have a Canary online site like etsy.com.
Exercise beats antidepressants in study after study on long term benefits. Humans were made to move. It releases many needed chemicals for emotional health, plus good physical health is important for Canary happiness as a trip to the doctor’s usually makes us ill. DVDs, jump ropes, metal free weights and nontoxic yoga mats are the safe at home gym equipment now. (See Resources.)
Keep a journal, filled with feelings, hopes, artwork, quotes, anything you want. It’s your book. Some Canaries end up becoming great photographers because it can be done digitally now and document their own lives in pictures. All forms of journaling can help you get to know yourself better and create a safe place to be real. Plus it is proof of all you have accomplished as someone with MCS.
Every night write down or think about all the things you did under great duress that day. If you made a healthy dinner and filled out a Medicaid form and did not answer the phone because you were intoxicated from the ink, you had a very successful day! If you allowed tears to change your brain chemistry, brushed your teeth and read a pamphlet on how to make your own cleaning supplies, you had a very successful day! If you sent MCS brochures to the health food store, the holistic health center, and the library, you had a very successful day! If you stayed in bed all day sick, you had a very successful day! As life gets harder, success is defined differently. Praise yourself for what you are doing with all the limitations of MCS. My favorite12 step saying is “Do not compare your insides to someone else’s outsides.”
Many people have been aided by self help books. Personally, I was greatly helped by Finding Life Beyond Trauma by Victoria M. Follette and Jacqueline Pistorello (the best self-care book I have ever read), The Happiness Trap by Russ Harris, The Chronic Illness Workbook by Patricia A Fennell, The Compassionate Mind by Paul Gilbert, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard and The Mindful Path to Self Compassion by Christopher Germer. If you cannot be around ink, try audio or e-books. Learning DBT, a skills based form of therapy for managing intense emotions, also helped me. It is a form of Cognitive Behavioral Therapy (CBT), the favorite for insurance companies because it has the highest and fastest rate of “success.” I do not know what that really means, but it works for many people and is a simple set of skills. Mindfulness and radical acceptance I have been told are the main ones it is hoped that people truly integrate into their lives. In 20 years the only therapy that ever helped live a life, are the third generations of CBT, like Acceptance and Commitment Therapy and Compassion Focused Therapy.
My paramedic friend explained the difference between anxiety and fear to me. Fear is good. Without a healthy sense of fear you’d die. Anxiety disables. Fear gives accurate information. Anxiety does not. So I try to use my fear as what it is – an urge to take safe action. My fear got me to take smart action. Anxiety is worrying about things that usually do not happen.
I still do mindfulness but in short bursts during the day. What is going on with me? Usually I am hungry or in need of sleep. Sometimes both and then I have to decide what to do first. Where mindfulness was once something I practiced to be aware of my thoughts and feelings, now I use it for listening to my body a lot more. This illness is very visceral. You feel the toxic poisons in your body. Being aware of them helps me to distinguish between my real emotions and the evil of poisons in my system.Forgive yourself for having symptoms that inconvenience others or make you mean. And then figure out what ways you can make it easier for yourself and those you love. And keep knowing it is not your fault that you have MCS and you can learn more and better coping skills for the rest of your life, so your life can extend to include so much more.