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Multiple Chemical Sensitivity Impacts Relationships

By Gaye Sandler

We hear from a number of IC patients who suffer with Multiple Chemical Sensitivity (MCS). MCS is a chronic condition marked by a greatly increased sensitivity to multiple chemicals and other irritating substances. (Refer to our August 2001 column, ENVIRONMENTAL ILLNESS AND IC, and to chapter six in our PATIENT TO PATIENT book.) The only way to prevent the symptoms of MCS is to avoid chemicals and irritating substances. However, this is obviously challenging in today’s world because scents and chemicals are everywhere.

Living with MCS is not only difficult for patients. It is also very difficult for their partners and families. I recently spoke to a couple of IC patients whose partners and families could not accept their MCS. They didn’t mind sharing their experiences:

--- Karen ---

Karen became sensitive to chemicals and mold after a roof leak, followed by exposure to moldy mulch that was delivered to her home. (Mold excretes chemicals, especially as it dies, and mulch can legally contain a certain amount of chemicals, heavy metals, and fish guts.) Although Karen sent the mulch right back, she became very ill. Desperate for help, Karen had three environmental consultants test the environment in her home. Her husband agreed when one of them suggested he thoroughly clean the basement, but he could not consent to remedial construction, as suggested by one of the others. Karen’s condition did not improve after the basement was cleaned so she began sleeping in a tent in her back yard. Sadly, she and her family had to eventually move. (MCS patients are quickly becoming the new homeless population!)

On moving day Karen discovered that her new home had been heavily cleaned with toxic products. After four hours of unpacking, with out bending over, Karen began to experience severe urinary urgency. She says her urgency was not caused by the physical act of unpacking, but by the toxic cleansers. Karen’s symptoms continued for weeks.

Although two years have passed Karen is still affected by something in her new home, and her IC pain has increased. Karen uses four air filters and has to sleep downstairs. She and her husband do not see eye to eye on her MCS. Fortunately Karen has a very good MCS support group, as well as an unusually good sense of humor. Karen likens herself to a dog. “Since I can smell everything all I need to do now is grow fur and bark!”


--- Michelle ---

Michelle was sensitized while bedridden after a car accident that shattered her pelvis. During her long recovery she became very ill and started to experience bladder pain. Suspecting that the cause of her illness was something in her environment, she had the gas company out more than once. But no one could find a problem until she called an environmental consultant. When the consultant’s gage registered high levels of methane (natural gas) in her home, he basically told Michelle to “run!”

Michelle attributes her IC to the gas exposure and poisoning. Fortunately she was able to get better by avoiding chemicals and breathing lots of fresh air, but Michelle’s partner could not accept the bladder spotting she experiences when she is exposed to toxins. Michelle’s family also can’t accept her MCS, but that has not stopped her from moving forward with her life. With a small grant she began her own business for MCS patients (as well as people who wish to avoid chemicals). Her business is divided into two parts, consulting and information about MCS, and the bigger part, her online store that sells organic products including organic cotton beds.

After talking with Karen and Michelle I asked Andy how he copes with my MCS. The next thing I knew he handed me a typed paper. He obviously had a lot to get off his chest. This is what Andy wrote:

"Dealing with Gaye’s Interstitial Cystitis over the past sixteen years has been challenging. I have dealt with IC by learning about the disease and finding ways to structure our environment and routine to minimize stress, and take advantage of times when Gaye’s bladder symptoms are stable. If there is anything positive about IC for me it is that there are things that I have control over that make my life happier. For example, I know how to make and enjoy delicious IC friendly meals. I’ve also learned how to enjoy traveling as long as we plan ahead and don’t do too much in one day.

In many ways, it has been much more difficult for me to accept Gaye’s chemical sensitivity. I think that Gaye’s chemical sensitivity has impacted my daily routine more significantly than her IC. When Gaye has a bladder flare-up she obviously suffers more than me because she is in pain. I feel badly for her, and will often try to run more errands or do more around the house, but I can go about my typical daily routine and not have to make any major adjustments. On the other hand, Gaye’s chemical sensitivity has forced me to make sacrifices that I resent at times.

Here are some examples of how chemical sensitivity affects me: Food is one of the most important things in my life and I love to cook. Because our oven is not well vented, I rarely cook with it. I almost never bake a roast, chicken or a turkey for Thanksgiving. I have to read newspapers and magazines in another room. When I bought a new car, Gaye could not sit in it for almost three months because of the new car smell. As much as I love that smell, I had to drive with the windows open during that period so that Gaye could ride with me at some point in time. When I bring clothes home from the dry cleaner, I have to immediately put them in a closet far away from our bedroom. I can’t wear these clothes around Gaye until they have off-gassed. We now have to use expensive scent and chemical free cleaning products and soaps that do not work as well as traditional products. The worst experience that we’ve had with chemical sensitivity is when we moved into an apartment that had recently flooded without our knowledge. We moved out of the apartment after three hours because the mildew fumes were so bad, even though we had stayed up the entire night preparing for the move and had no where else to go!

I also think that chemical sensitivity is hard for me to deal with because of the difficulty in controlling our environment when we leave our home. It is different than IC to me. We never know when a person sitting next to us in a restaurant, or even worse, an airplane is wearing lots of perfume. We often have to move to another seat or restaurant when fumes are too toxic. Hotels have been a huge problem. We have had to change hotel rooms and even hotels when the rooms have scents or fumes. That is extremely stressful after long flights.

I admit that my thoughts and feelings about chemical sensitivity are selfish because Gaye is the one who has the horrible reaction to irritants. I also know that I need to learn as much about chemical sensitivity as I have learned about IC. Often, my initial reaction is that the problem is not real when Gaye complains about smells. Sometimes I doubt what Gaye says and deep down I believe that if Gaye tries hard enough to ignore the smell, the problem will go away. It is a good thing that I do not feel the same about Gaye’s IC, but I want to stress that I try very hard to ignore my initial emotional reaction when I am dealing with Gaye’s chemical sensitivity. Most of the time I do whatever I can to reduce chemicals in our environment. I know that I am far from being the perfect husband but I do try my best to deal with this stressful variable in our lives. I also know that if I don’t deal with Gaye’s chemical sensitivity things will get worse for both of us.

I think that the last sentence is the bottom line, and I hope that partners and family members would just realize that without addressing MCS, symptoms get worse. When symptoms flare everyone pays the price.”

Although I find it difficult to read about my partner’s resentment, I do not feel in the least bit guilty. I did not ask for MCS, and as Andy wrote, I am the one who suffers the most. Anger in relationships, about this terrible condition, should be solely directed to those who are responsible for producing and manufacturing the very products that are making so many people ill these days. Basically, MCS patients are the canaries of today’s chemical industry. I strongly believe that many of the big companies who are pumping out toxic products will follow in the footsteps of the large tobacco companies -- for not caring about the consumer’s health.

LAGNIAPPE (a little extra)

There is hope! Andy and I have two doctors with signs in their offices requesting patients not to wear perfume or scents to their appointments. One of the doctors has an article up titled Death by Perfume. In Oakland, California the hospital and medical center Kaiser Permanente asks patients not to wear scents when they call to confirm appointments. And from what I hear, the city council meetings in Marin county California are scent-free. This trend is also happening in Florida where there are resorts and living centers for people with MCS.

Help is now available for people with MCS who have been discriminated against by medical professionals. According to the N.E.E.D.S. newsletter, October 2004, many people with MCS have been labeled as having been abused during childhood, or as lazy people who want to avoid work, and so forth. Like IC patients, MCS patients often get the blame. Thankfully, there’s now a place to refer physicians who discriminate against MCS patients. It is the National Environmental Education and Training Foundation at www.neetf.org.

Andy and I wish you all a very Happy New Year.

 

About The Authors:
Gaye is an author and IC patient & support group leader who has been involved in IC work for years. In 1990 she published "Stretch Into a Better Shape" and produced a stretching and exercise video for IC patients in 1993. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew has over ten years of clinical and health care management position. He is currently the Administrator of Maison Hospitaliere, located in New Orleans. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

They welcome your comments and feedback on their articles at: The Sandlers


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