All in the Family

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 Although these ideas are slowly becoming outdated and archaic, so many women still marry for security rather than love.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?