Your Soon to be Former Friends
Some people may blame you, say you are faking to get out of work, or claim it is all in your head. People with other invisible disabilities also face this utter lack of compassion and understanding. You may be called a “victim” as an insult when it is just a fact and has nothing to do with your character. Usually the people who do not want to (or pretend not) believe you are the ones responsible for your chemical injury or have a vested interest in things not changing.
Shame may be thrown at you in the form of “God’s Will,” karma, and “lessons from the Universe,” with nonsense about you “attracting and manifesting this” or just not having “enough faith” so you are being “tested by God.” It helps them think that they are safe from what you have. They can pretend that only bad people get sick because life is fair. Some spiritual and religious people may actually shun you. A lot of people leave their religious or spiritual community when they become ill and have to change their understanding about life’s meaning. I say that unethical corporations, institutions and governments are “created my reality” and that apathetic people allow it to continue. You might also say: “My God is a loving God. Yours sounds viciously cruel.” “The original meaning of karma is right action in regard to Vedic rituals. As far as I know, I am not a Brahman and I did not make a mistake in a Vedic ceremony.” “I am not narcissistic enough to think the Universe planned all this out to teach me something. However, the lesson may be that many people have MCS and humans must stop this toxic madness.” “Do children with AIDS deserve that?” “That does not help me.” The people who say these Sadistic “spiritual” things usually are deeply wounded and living in intense denial. They talk from fear, not love. (More about spirituality and religion and Canaries later, because many of us have internalized these same “blame the victim” views that are self harming.)
Anyone who chooses not to believe in MCS will not change their minds, so walk away. There are many more important uses for your emotional energy than to argue with ignorant people who have no desire for truth. You may have to limit contact with your family and change some of your friends, but you have the satisfaction of knowing the people in your life, even it is just one pen pal right now, are people who respect and truly care about you. I often say the fastest way to lose your “community” is to become physically disabled and/or emotionally healthy. This is common for all chronic disabilities. It’s sad, but our culture is very uncomfortable with anything that cannot be “fixed” and has the expectation that life be 100% happy, fair and pain free. Sick friends, especially with “mysterious” MCS, ruin that dream world of denial where life makes sense and bad things happen to bad people for good reasons. Your financial status and your social activities will probably change and your old friends may not be willing to adjust to the change. A lot of people are not emotionally ready to handle other people being sick. Ambiguity is scary.
Just so you know, it’s been proven that you do not need to forgive abusers to heal. Trying to force yourself or force someone else to forgive can harm you/the person more. It is important to feel whatever feelings you have regardless of how it makes others feel. A lot of people are so afraid of anger, they will do anything – include use the “You must forgive and forget” line – to shut you up. This is so invalidating to the victim/survivor. However, you do need to eventually move on from obsessing about them or they win your life. Sometimes survivors of abuse – and having MCS is a form of abuse in my eyes – are afraid to have good lives in case it makes people think that the abuse wasn’t “that bad.”
Often persons with invisible illnesses will have easy days and hard days, and are afraid to enjoy their easy days lest they get in “trouble” or “caught.” Don’t let the judgments of others keep you from your joy. If people do not understand that just like the weather or their emotions, your health also changes, they are not smart enough to be your friend.
See Resources Page for links to sample letters you can send to persons who might want to visit with you.
75% of all marriages end when one person (usually the woman) gets a chronic illness. This is especially true for husbands; one theory being that many men cannot emotionally bear seeing suffering they cannot fix so they must leave. (A lot of men have more emotional strength than this and can stay and be compassionate loving partners.) While we say “In sickness and in health” in truth a lot of people do not want to be affected by someone else’s tragedy. They feel that they didn’t “sign up” for this. Never mind that you didn’t either. Losing your home, income and freedom is hard enough, but losing your spouse and family and community is often the most devastating part. Illness often involves many different losses to grieve. (Note: I have read no studies about same sex couples, transgendered persons or polyamorous relationships and chronic illness.)
Protecting Yourself From Abusers
Boundaries become very important as exposure makes you ill. There is no compromising possible. You have little room for negotiating. Zero tolerance of toxins. People, including you, will make mistakes. Those who show a pattern of not respecting your health needs will have to be managed.
If you have never been sure of how to appropriately ask for needs to be met, without being aggressive, passive or passive aggressive, DBT, perhaps the most popular form of therapy today, has handy one page guides. Search online for DBT DEAR MAN. It basically breaks down into this formula: “When you (describe the specific action in facts, like “do not take off your shoes when you come to visit” or “give me medical advice”), I feel (name your feeling: angry, disrespected, sad, afraid, etc).” (This gives them the facts of the what the issue is and makes a human connection to the feelings. Unless they are a sociopath they ought to be able to understand this.) “I want (name what specific behavior you want. Saying you want respect, compassion or help does not mean the same thing to every person. Saying “you to put your shoes in the bin outside” or “to trust me to handle my own medical care, respect my choices and not discuss it unless I want to” is clear. No one can say they didn’t know what you meant.)”
Then comes the hardest part for many disabled people: The consequences. When you are so dependent on others and so vulnerable, you often have to accept abuse others wouldn’t. I wish I could say you don’t but the fact is, sometimes you do. All oppressed people face this. You need to choose what the battles you need to fight are. Many differently-abled women are in relationships where they are abused because “who else would love them” and have no other source of income, disabled people are incredibly vulnerable for physical, psychological and systemic abuse, and many differently-abled persons have to endure humiliating, degrading medical and social service appointments. People do get post traumatic stress disorder from the abuse experienced in the health care system.
The consequences of someone crossing your boundaries have to be something you can and will do, but that does not leave you in the lurch. With some people the stakes are lower and you can say “If you won’t do this, I will not invite you over again.” But if it is your landlord, depending on the situation you might say “I will report you to the Housing Authority.” Know what each one involves first so you can stick with it.
The consequences can also be something the other person might want, like “If you do this, I will bake the cake for my niece’s birthday” or “If you do this, my rent will always be on time.”
Please see the Resources Page, especially for legal matters.
The Upside of “Cleaning out the Friendship Closet”
One wonderful/terrifying side effect of being disabled is that you have a great chance to learn to be assertive, put your own needs’ first, and set and keep boundaries. Your time and energy are limited. As they say, put on your oxygen mask first.
You get an amazing test immediately to weed out the disrespectful people who claim that their fragrance won’t bother you if it’s just for a moment. All the emotional vampires and black holes and crazy makers will leave your life. It’s nice. The blood suckers you couldn’t ditch for decades are history once you have nothing for them.
“So what do you do?”
Ah, the dreaded American question asked of all strangers! (I never found this to be true in Ireland, England or Canada. Usually people wonder what my opinion is on politics or the arts. How I pay my bills isn’t that important to them – nor does it define me in anyway. This may be different for men there.) When someone asks me “What do you do?” and I say “I am disabled” I don’t think it answers the question in any meaningful way.
I say what I DO, regardless of the fact that it doesn’t make money. “Work from home for an international environmental justice alliance with a focus on disability rights” is a current favorite one. No one ever asks more because they do not want any stats on depressing things. Then they talk about themselves. (Most people are self absorbed and are not interested in your life.) If you garden, write, sew, or experiment with healing modalities, that can be what you DO.
The reason I no longer say writer is it turns out everyone thinks they are a writer and then want me to help them get published, too. I don’t say artist anymore either, because they want to know about my shows and if I don’t want to discuss MCS, how do I explain I cannot have shows? And then they ask “What do you do for money?” which is very rude. Mom says “retired” as she had to take early retirement because she is too ill to work. People I know who have always been on disability say retired as soon as they look old enough for it to seem plausible.
Or you can say “I was chemically poisoned and now am made sick by anything synthetic and am living in my car” and throw up on them if you are sick and they are really annoying you. I haven’t done this but sometimes when my intoxication makes me mean-spirited I dream of doing this.
Ugh, Support Groups and Therapy Make Me Ill
You probably can no longer attend what supported you. Religious services, 12 step groups, support groups, and therapists’ offices are usually toxic. Some therapists will come to your house or do phone sessions, but few insurance companies will pay for phone sessions. Where I currently live, my Medicaid case manager told me there is not one therapist she can refer a client to because all of them have stairs. As she works for a home health agency, her clients all have mobility issues. There are many barriers people do not think about when opening an office. The Disability Rights Movement has a lot of work to do.
See the Resources Page about links to support groups and peer counseling.