Have you seen the movie Safe?
It’s about a woman (Carol, played by Julianne Moore) who develops a mysterious and steadily worsening illness—most likely multiple chemical sensitivity.
I watched it in college. Though it was a great film, it encouraged me to dwell on my own mysterious illness, which had begun earlier that year. The film set up questions like, “Is her illness even real? Will she ever get better?” Watching it, I couldn’t help but wonder the same things about me.
Later, of course, I found out I have celiac disease, and that it could get better. I just have to not eat some things (okay, a lot of things). Except for avoiding crumbs, I don’t have to worry too much about my environment. I won’t find gluten in the air anywhere besides a bakery, and the worst chemical I contend with is natural flavorings.
But I remained curious about chemical sensitivity, which I didn’t know much about beyond its portrayal in the film.
Now, I’ve learned about it from Kathryn Chastain Treat, one of my earliest readers and strongest supporters. She blogs about her extreme chemical sensitivity, and she’s just finished a book: Allergic to Life.
To celebrate her book’s release, I asked her a few questions about what is still a misunderstood and mysterious disease.
Readers, we’d love to hear your answers to these questions, too!
What do you feel your experience has in common with the experience of people with celiac disease, gluten intolerance, or food allergies? What’s most different?
Kathryn: I feel that in some ways we are very similar. We can’t just go and eat anywhere or anything. I have food allergies, which causes issues similar to those that someone with celiac disease encounters when dining out or with family and friends.
What makes me different is that I have not only food allergies, but also sensitivities to chemicals (perfumes, colognes, fabric softeners) and mold. I do a lot of dining at outdoor cafes if they can tolerate my food allergies (which include foods that may contain mold, like vinegar and soy sauce) and if I can manage to find seating far enough away from someone who is very scented.
What misconceptions do people have about your illness? Which get you mad? Which do you think are just funny? How do you respond?
Kathryn: I believe people, including many in the medical profession, feel that my sensitivities to chemicals and mold are not that serious. They believe that if I can manage a short time in a store (with my mask) that I should be able to go anywhere anytime I want. I also feel that people believe because I do not work and stay at home that I just sit and watch television and eat bon bons in my fluffy slippers.
What makes me the maddest is not taking my symptoms seriously. I think the perception that I have all the time in the world because I don’t work is probably the funniest. They have no idea how much work it takes to stay as well as I have managed to get and how long it takes to clean my house.
I have responded that my total load of what my body tolerates varies from day to day. If I am having a good day, then I can make a trip to the store. I can’t do this every day or spend all day doing this because despite my mask, my body gets too overloaded with chemicals and I end up sick. Sometimes I just ignore it all together because it is hard to convince someone once they have their own preconceived ideas.
What’s the funniest thing that has ever happened to you as a result of being ill?
Kathryn: My younger daughter was here for a visit and we were scheduled to visit my older daughter. My younger daughter had her hair done earlier in the day. Not thinking (I blame my off and on again companion—brainfog), we just jumped in my car. Of course she put on one of my required tyvek suits to avoid bringing any fragrances or chemicals into my car. We started down the road, and about ten miles into our trip I was having difficulty. I was getting a headache, congested, and my voice was slowly getting more of a crackle in it. Suddenly it dawned on both of us that her hair was making me ill.
As soon as possible I pulled to the side of the road and we both jumped out. How were we going to make it safe for us to continue on our journey? We couldn’t go on the way things were and I couldn’t call anyone to come help us. We searched the back seat and then the trunk to find something we could put over her hair.
Aha! There it was, a white plastic garbage bag in my trunk. I always keep some in the car for emergencies or having to put someone’s belongings in it before they can ride with me.
We got the bag out of the trunk and tried to put it over her hair. The wind was blowing and gusts of air would get under the bag and fill it like a balloon. We fought and fought the wind and the air in the bag. Here we are on the side of the road, she is already wearing the white tyvek suit, and we are now trying to put a bag over her head.
Enter the highway patrol cruiser. Just as I thought things couldn’t be worse or crazier than they were, the officer gets out to see if we need assistance. I have to explain as simply as I can without appearing to be a lunatic that I have sensitivities to chemicals and my daughter has just gotten her hair done, making me ill. I also explained that we were trying to cover her hair up with the bag but the air kept getting inside the bag. I purposely tried to ignore the fact that she was dressed in this white suit. The officer, however, noticed and made some funny comment about her tyvek suit and Ghostbusters and then calmly walked over and helped us get the bag on her hair. I was then asked to move aside so that he could write down my license plate number, which was required because he had stopped to check our status. As he walked away, he said it bothered him too when his wife got her hair done.
The story doesn’t end there. A few weeks later our tenant came to pay rent. He was talking about having coffee with his highway patrol officer friends. One had commented about these two women on the side of the road and how he had to help one put a bag over the other one’s head. I immediately started laughing and told him that I was one of the women he rescued that day. Our tenant knows all about my sensitivities and about my story. He started laughing and said he couldn’t wait to tell this particular officer that he knows the women.
I knew the officer would most likely go back and tell the story to all his buddies. I mean, how often does this kind of thing happen?
Okay, now what’s the least funny?
Kathryn: The least funny thing was when I made a quick trip with my daughter into Target. We were getting what she and I needed when we ran into a woman pushing her shopping cart with a little girl trailing alongside her. She saw me with my mask and made the fastest turnaround I had ever seen someone make with a shopping cart. I am sure she thought that I was contagious, and what she never knew was that I was more likely to get sick being around her than her from being around me.
What book or movie character would you nominate as the mascot for chemical sensitivity?
Molly: This was my final question, but we’ve both been wracking our brains and haven’t come up with anyone yet (there’s gotta be a Harry Potter reference in here somewhere). I don’t want to nominate Carol, because Kathryn and Carol don’t seem too similar (watch the film and you’ll agree).
Can you think of one? Let us know if so! Also, be sure to share your own funny and unfunny health stories. And, of course, check out Kathryn’s book.
She is offering a giveaway of three autographed copies through Rafflecopter, and her book is available at Barnes and Noble and Amazon (prices vary). Autographed copies (US Only) will be available on her website.
This is stop #7 on her book blog tour, and you can find the rest on her blog.
A lot of my own funny stories, by the way, have taken place at breakfast. But they weren’t funny to me at the time, AT ALL, because breakfast for me was VERY IMPORTANT.
I have a lot of digestive issues, but at some point I realized I could make most days at least an okay day by sitting quietly over a long breakfast with a lot of coffee. That seemed to give my intestines the chance to do something right for a change. I would prepare for my breakfast routine with all the solemnity of a religious ritual, setting out my computer, my cereal, my enormous coffee mug, my water in a little semicircle at the table, and then I would sit stonily and ignore anyone who entered the room or attempted to speak to me.
“Could you please just pretend I don’t exist?,” I’d politely request. If my phone rang, I ignored it. Someone at the door? They could come back later. And woe betide any who persisted in trying to get my attention during my routine! If pestered, I would fly up in a rage and shout, “Leave me alone! I NEED TO RELAX.”
Looking back now, this was at times such an absurd imposition on other people (if visiting home, I’d try to find a spot in the house where no one else was sitting; if someone joined me, I would purse my lips and flee–in several trips, of course, to bring all of my necessaries) that I can’t help but laugh. However, it got me through some tough times, so although I no longer need it, I fondly remember (and chuckle about) my old daily “ritual.”
And woe betide anyone who tried to take a cup from your pot of coffee! 😉
HA! You’re right. How could I forget to mention that?
Molly – Thank you for having me here on “based on a sprue story”. I have always enjoyed reading your blog posts and you did an excellent job on the interview. A post on my blog introducing you and your blog is up as well. I love your funny story. I know all too well the need for time alone.
This was a very interesting interview! I loved the story of the stop by the side of the road. There does seem to be a lot of similarities between celiac disease and multiple chemical sensitivity, especially in the frustrations involved in handling strangers’ perceptions and the limitations it places on your social life.
Laurie – Thank you for stopping by and leaving a comment. Molly and I both appreciate it.
Hi Kathryn (and Molly),
Thank you so much for bravely sharing your story. I am not familiar with multiple chemical sensitivity and I look forward to checking out your blog and book. When I developed my sulfite allergy as an adult last year, 2 and a half years after my Celiac diagnosis, I met many women online who have similar symptoms to you on the sulfite forums. Did you have mast cell issues ruled out? MCAS ended up being the root cause of my issues with sulfites.
I will definitely share your book with others, I have people write to me all of the time whose symptoms do not fit into a neat little box.
All of the best to you!
Thank you Jess. I do also have a sulfite sensitivity. Mold set me on the path of MCS. I appreciate you sharing my story and book information. Unfortunately, none of us fit into a neat little box. Wouldn’t life be easier if we did?
If you haven’t entered the rafflecopter to win one of three signed copies, don’t forget to do so.
Thank you so much sharing my MCS sister– Kathryn’s story— which makes even more people aware that there are hundreds of thosusands of us who suffer from MCS– & everyone should stop the use of toxic killing chemicals— as every person on earth is effected by those toxic chemicals IF– they know it or not!!!!
Thank YOU for stopping by to comment. It’s so tough trying to navigate through all of the modern “amenities” and technologies we have and figure out which are actually beneficial. Maybe the “slow food” movement and other such things will eventually result in decreased reliance on chemicals.
GAHHH I have a list of things I want to blog about and I KNOW I wrote down a fictional character that could TOTALLY be the MCS mascot and I CANNOT REMEMBER. IT’S GOING TO DRIVE ME CRAZY. But I’ll blog about it…..someday….. since I’m pretty sure I’ll have forgotten by the time I get home to my list.