What is your illness called?
It is commonly known as MCS, multiple chemical sensitivities, but the groups who have it and are active in getting help, etc., are saying that this term causes controversy. I like CE, for chemical environment, or another that fits is CP for chemically poisoned.
When did chemical sensitivities become an issue for you?
I was first hit hard with lawn care products in 1995 and developed pneumonia and viral bronchitis from day one. I had many small hits before and wondered what it was, often saying, “high allergies”. Several years later I stumbled onto the name of this ailment and also learned that it was not well recognized, even by western doctors.
Did you stop attending church immediately, or was it gradual?
I attended church for many years after, and when I learned which people were the 'safest' to be near, tried sitting there. I had to move at times, as those who came in after and sat near, fragged. I needed to be away from that spot. It has been approx. 8 years since I needed to stop attending, as there was major remodel work going on at church, and there are many harmful items that are with that.
Are you able to go out at all? What do you need to do to go out?
I go out to do grocery shopping, as no one seems interested in helping. My grand-daughter volunteered 7 or 8 years ago. Then her doctor said “no more”, since she was carrying triplets. (A good, even great, reason, me thinks, for her not to help.) Along with that, I do other chores sparingly. Also, I see a great nephew a few times a year, and, very sparingly a friend, about 2 times a year, when she gets yarn for me. We go to the local family restaurant which is fairly frag free. I watch where I sit, being ready to move on the warning of nearby frags.
I am not even in the homes of my own children or grandchildren. No one seems concerned that they are prime people to be chem sensitive themselves. One son, who may have some of the early signs of MCS, lives away, and he is being careful, esp. with laundry and life style.
I wear a mask to grocery shop and at the beginning of the eat outs. But this is not very helpful. I use drive ups at fast food places also. I eat solo after, but enjoy not being the cook.
What has happened to your relationships with other people as you became increasingly sensitive to fragrances, chemicals, etc.? Have you become more isolated due to your sensitivities? If so, what have people said to you about your increasing isolation?
Yes, I am almost totally isolated, as my son who lives locally sees me near Mother's day, my birthday and near Christmas. We have been doing the drive thru and eating in his car for a few years. It works quite well, tho there are some frags to deal with after. Even with this limited exposure, I am doing physical harm, but a mom needs to see her family.
I have to protect myself when the doorbell rings and the person at the door is loaded with a frag or lawn care products. I take all these calls at the garage door. People don’t understand. Once, while in the hospital, a heart surgeon checked on me; he reeked of a foreign aroma and stunk up my recovery room for at least 6 hours even though the staff had taped 4 signs to that room’s door all saying in diff ways, “NO entry with frags”!!
So far the problem with MCS SEEMS to be that the nonbelievers are attacking it and calling it not real, a ' head' problem. That seems also to be what many people encounter when trying to get their disability needs met, (Doctors are sending them to psychiatrists.) as most can no longer work. Many work places are chem laden as are many schools, which then harms our little ones.
My computer is my biggest contact with others. I am old, not PC literate and not trained in typing, but I am very grateful for the opportunity to have and use, even limited, this "social” ability.
What would you like people in church to do so that you can worship and be involved in fellowship, Bible studies, etc.?
1. Ask me if there are areas that need to be clarified.
2. Talk about MCS. There is no discussion of the ailment. I am not sure if that is nonbelief or denial.
3. Use safer cleaning methods such as baking soda, vinegars, etc. The people could change their laundry products to safer soaps. NO dryer sheets, and stop using fragranced personal products. No fragged candles. Organic flowers only; all the others are chemically treated.
Making these changes would be good for the ill ones, and for everyone. ANYONE can get this at any time, as I and many others have.