I chose not
to get married and have kids at a very early age because I expected I would
live a single woman's life of adventure. I was told as a young girl I didn't NEED to get married because I had too much going for me. This was the
most influential advice of my life and given to me by a woman in a very bad
marriage. At the time I made the assumption this very sad wife must have needed to get married and I vowed I'd
never be so needy.
As women, we
have lived with the stigma of past social norms and traditional gender roles.
Men provided and women managed the home. Women weren't expected to provide for
themselves because it was thought they were incapable of independence. Although
these ideas are slowly becoming outdated and archaic, so many women still marry
for security rather than love.
When I became
chemically sensitive, I temporarily lost my ability to support myself and I was
forced to sacrifice much of my lifestyle to be healthy. It was frightening to
feel so alone and vulnerable and it changed forever my perception of self-reliance
and security. I now understand the feeling a woman might have to NEED to marry. How nice it would be to
have a man to care for me and support me. No stress over not being able to work
and pay the bills. Someone to shop for me. Someone to do home improvements and
maybe a little car maintenance. I understand it now. Idealistically, I envision
a house full of supportive family members lovingly adjusting their lifestyles
to fit my health needs. My own built-in community! Who needs outsiders when I
have a fragrance-free family? How perfect!
Well, life is
rarely perfect. Some MCSers have supportive, caring relatives, but in reality
most family members don't understand unless they have personal experience being
chemically sensitive themselves. Relatives may (or may not!) be concerned at
first and strive to assist, but after a while, the effort becomes too
exhausting as they search for answers that aren't there. Eventually, they
wonder if their spouse or sibling is mentally ill or making it all up. Families
often express a certain entitlement to their chemically sensitive relatives.
After all they have known this person all their lives so how can this be
happening? It doesn't make sense to them
and the stress of constant support gets to be too much.
Many MCSers have
expressed guilt. They aren't able work and they worry about not contributing.
How will the family manage on a one-income household after years of double
incomes? When will their husbands decide it's too much trouble? What will
happen if their husbands decide to leave them? The medical bills are too
expensive. The hopelessness of chronic illness is taxing. This wasn't the idea
of marriage agreed upon at the wedding.
Chemically
sensitive parents worry they can't be normal
parents and provide a normal life for
their children. They are unable to attend school events, classroom activities,
parent conferences or sports events. No birthday parties. No vacations. No
family reunions or holiday gatherings. No slumber parties or friends over for
after school snacks. How do they shop for clothes and school supplies when they
can't go near a mall? How does one keep a teenager from wearing scented
products and perfumes?
Others
experience their family's unsupportive, negative attitudes toward their health
issues. Their grown children purposely wear scented products and accuse them of
faking illness for attention. Their husbands tell them they are pretending to
be sensitive only as a reason to quit a job. They assume their loved one has a
secret agenda for being ill, and they are pretty sure it's to ruin their own
self-centered lives.
A
chemically-sensitive patient came into the medical offices where I was a
medical assistant. He immediately became anaphylactic upon entering the waiting
room and I escorted him out of the building back into fresh air. This was his
first visit seeing this doctor who claimed to be an environmental specialist
although was obviously incapable of providing a safe waiting room for his
patients. In her husband's stead, the wife kept the appointment and I stood outside
with him. Later I was told the wife informed the doctor she was concerned for
her husband's mental health as he was afraid of leaving his house. She believed
it had nothing to do with chemical sensitivity - he was making it all up so he wouldn't
have to go outside. Listening only to the wife and not even meeting with the
patient, the doctor diagnosed him with agoraphobia. How betrayed the patient
must have felt by his own wife's misunderstanding and lack of support.
My family
members are preoccupied with self-indulgent addictions and I learned long ago
expecting any kind of support is futile. Expectation breeds disappointment and
that is worse than my self-imposed exile. What I don't understand is why no one
else in my family is chemically sensitive? We have the same genes, same
childhood, same background. I'm the only one who doesn't smoke, who doesn't
drink, who doesn't do drugs, doesn't wear scented products, and who doesn't eat
Hostess Twinkies for breakfast. Where did I go wrong and why are they off the
hook? If I die before any of them, I guarantee I'm going to haunt them
mercilessly!
Every now and then I briefly imagine what it would be like with a
caring husband and loving children supporting me through tough times, but most
of the time I think the dream is unrealistic. I have yet to meet a chemically
sensitive person who has family support and/or doesn't feel guilt. I have enough to think about; I don't need the stress. I am
thankful I live alone and I do have a lot
going for me. I have control of my air space, what or who comes into the
house, what I eat, how I spend my day, what I do, and most importantly, control over the detrimental attitudes
I would be forced to endure from people who don't care and don't attempt to
understand. And adventure is relative (pun could be intended). Being chemically
sensitive is an adventure all by itself!
Who in your
family is the most supportive?
Who is the
least?
What is your best
family story?
Most of my
favorite activities involved people and anytime there are large numbers
gathering for any reason, there is always stink. It doesn't matter how many
times you ask people to be fragrance-free or whatever effort you make to communicate
the need for unscented products, the more people involved, the more risk. At
least one person will not understand what fragrance-free means and all it takes
is one person to pollute the shared air.
