Americans with Disabilities Act · chemials in clothing · MCS · TILT

Things to keep in mind when you are visiting someone with MCS – TILT

twitter imageThe journey of someone with MCS, TILT and MCAD is often a lonely one. It is a journey plagued by solitude and isolation. The hardest part for those of us who have multiple illnesses and MCS is finding empathy and understanding from our loved ones. Too often our family and friends become overwhelmed and uncomfortable with everything that affects us so they disengage and relationships are damaged.

Many times we feel guilty for having to ask family and friends to make accommodations for us. Some of us value our relationships so much that we would rather deal with the unbearable symptoms after an exposure then speak up and sound offensive by our requests. It is a cycle of self destruction. We place others first at the expense of our own health…until we crash and end up in a hospital or breathing through and oxygen mask.

After months of being very sick following an exposure, everything begins to settle in. We may be told by our physician that we have to practice extreme chemical avoidance.
Some are prescribed oxygen tanks to use at home, some have to be hospitalized until symptoms settle and all functions are stable. In every case it is different but symptoms are usually quite severe before we are forced to speak up.

If you have a friend or family member with MCS or TILT or MCAD please don’t forget your compassion. Don’t write them off. Don’t stop visiting unless they ask you to.

Below are some things to keep in mind when you want to visit someone with severe chemical sensitivities or Multiple Chemical Sensitivity (MCS) – Toxicant Induced Loss of Tolerance (TILT).

Before we can proceed I must ask. Do you know what MCS/TILT is and how severely it affects people? Before continuing please click here to read about this debilitating illness.
We even have a entire month dedicated to us. You can read about that here. Interested in peer reviewed studies, then click here.

MCAD (Mast Cell Activation Disorder) also affects many people who have MCS so please be cautious as this condition intensifies MCS and makes it nearly impossible to be around any type of trigger. “MCAD, is an immunological condition in which mast cells inappropriately and excessively release chemical mediators, resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks.” Source

So now that you know what MCS is here are some guidelines you can follow when going to visit someone with chemical sensitivities or MCS. Please note that not all people will need to follow this extent of precaution. Each person is at a different stage of their illness so I recommend that you share this list with them and have them tell you the things that they would like you to do prior to visiting.

Also note that Essential Oils even the ones that are in their purest form are NOT tolerated by most people suffering from the above named illnesses, so please do not use any on your body, hair or on your clothing for a few days before your planned visit. 

Procedures for the day you are planning to visit:

Clothing and Laundry
Wash all clothing you plan on wearing at least twice to remove any residue of perfumes, etc. If you use fabric softer and detergent with fragrance it is best to purchase a clean set of clothes and wash them by hand and hang them to dry as the washing machine and drier will have the fragrance from previous washes and will make the clothes you are washing pick up those fragrances.
Clothing can be washed with 4 cups of baking soda and water. If tolerated by the person you are visiting, you can also add in 1-2 cups of vinegar and a fragrance free liquid detergent like Seventh Generation Free & Clear. For another fragrance free detergent option click here. http://www.ewg.org/guides/cleaners/3197-GrabGreen3in1LaundryDetergentPodsFragranceFree#.Wd9_EZ8pDgA
Let clothes soak for a few hours or overnight and then rinse.

Do not use regular detergent even if it says “Scent Free” because in many cases the manufacturing companies use chemical masking agents to cover up the chemical smells used in their products.
Do not use any fabric softer. Dry your clothes and put them on just before you are ready to leave home. If you are not wearing clothes immediately place them in a large new zip-lock bag and store them away from any fragrances until it is time to get dressed.

Showering
Clean the body and wash your hair in fragrance free castile soap like this one or like this one found at Walmart. Do not use any of your shampoos, conditioner, hair styling creams, moose, leave in conditioners or detanglers in your hair. You can also use Dr. Bronner’s liquid or bar soaps, True Body Unscented Soap or Kiss My Face Fragrance-Free Soap bars. For a list of fragrance free products please click here.


Moisturizing Conditioning & Deodorant

Ask the person you are visiting if they can tolerate refined coconut oil or grapeseed oil. If they can, you can use these oils to moisturize your skin and condition your hair after coming out of the shower. Refined coconut oil has less of a smell and is tolerated by many people as is pure grapeseed oil.

Do not use any type of store-bought deodorant. You can mix a pinch of baking soda in 6 tablespoons of water and apply with a rag under your arms. You can also slice a lime or lemon and rub under your arms. Some people with MCS can tolerate fragrance free deodorants but always ask them before applying.

Beauty
Makeup should be avoided unless it is mineral based and fragrance free and it is approved by the person with MCS. Some people can tolerate a fragrance free lip balm and mineral based blush but others may not be able to so always ask before using any cosmetic products.
Do not dye your hair or do any hair treatments at least 2 weeks before you are planning to visit as chemicals in these products will linger on hair for days and can cause a reaction.


Shaving

Do not use any shaving creams, moisturizer, beard wax or aftershave. If you need to shave do so a few days before your visit or if you must shave the day of your visit you can mix grapeseed oil and castile soap to use as shaving cream.


Gas Stations & Perfumes

Do not stop to pump gas the day you are visiting. Petrochemical fumes stick to clothing and shoes and affect a person with MCS almost like spraying them with perfume would.
Perfumes are included in this section because over 95 percent of the chemicals in synthetic fragrances are derived from petrochemicals.
Do not use any perfume at all, not even if it is organic or all natural. Also do not use any essential oils as they contain chemical compounds that can cause reactions.


Vehicle & Home Maintenance

Remove all scented air fresheners from your vehicle at least 1 month before visiting the person with MCS. Open your car windows each day and allow the car to air out as you drive to remove any residue of chemicals. Although removing car air fresheners may be beneficial to some people with mild MCS, many will react to a car’s air freshener even months after the fresheners have been removed since a small residue always remains from air fresheners. So play it safe and always ask your friend with MCS what they prefer you to do. They may suggest to ride in someone else’s car that does not use car air fresheners.

Discontinue all use of air fresheners in your home at least one month before planning your visit. This means plug ins, sprays, moth balls etc. Let your home air out each week as well by opening windows.

Do not paint your home, use chemical household cleaners, fertilizers, bug spray or disinfectants on the day you are visiting someone with MCS.


Purses & Backpacks

It is best to avoid bringing large bags when visiting as these can often pick up smells, molds and other bio contaminants from places you have visited. If possible place your identification and main items in a small wallet or zip lock bag. You can also lock your bag in the trunk of your car if you feel secure doing so.

For families traveling with children or people needing to carry many items, use a washable diaper bag, purse or backpack, and wash following the procedures mentioned above.

Upon Arriving For Your Visit

Be prepared to take off your shoes and place them in a bag, garage or on a shoe rack.

Don’t be offended or take it personal if you missed something and your host reacts with strong symptoms. Try to be as understanding and loving as possible and follow any suggestions they may give you such as washing your face, showering, changing clothes, clipping up your hair etc.…

Remember this person suffering could be you. Think about how you would like to be treated if you were in the same situation. Place yourself in their position.

Avoid making critical or judgmental comments such as:
“Oh my goodness but I thought my body wash was OK. I don’t react to it at all and I have severe allergies.”
“You are so sensitive and it seems crazy to have to do all this just to visit you.”
“Haven’t you seen a doctor already? Why aren’t you cured? You must not want to get better.”

Comments like these are a slap in the face and they are like telling someone in a wheelchair with a crippling disability that they need to walk to and from their car without using a wheelchair.

Did you know that people who suffer from TILT and MCS are protected under the Americans with Disabilities Act? These conditions are considered disabling as they severely alter a person’s quality of life, their ability to work and function properly.

Please do not discriminate against them the same way you wouldn’t discriminate against someone with muscular dystrophy, cancer, ALS or someone in a wheelchair.

Thank you for visiting this page and learning about MCS and other Environmental Diseases. If you have found this information useful and this page has helped you in any way please consider making a tax deductible donation online via Helping Hands Ministries for my ongoing medical treatment and recovery by clicking here.

For more tips on becoming Fragrance Free in your home click here and here.

 

7 thoughts on “Things to keep in mind when you are visiting someone with MCS – TILT

  1. Great article, lots of resources and ideas for me to give to family, friends, and service people before coming, and to educate them about MCS. Thx

  2. A great article. Although I am confused as to why you are advocating Seventh Generation Laundry soap to use around people with severe MCS. It contains benzisothiazolinone and methylisothiazolinone (synthetic preservatives). These preservatives are a common trigger for many with MCS, myself included.

    1. Glad you enjoyed the article. As mentioned above, it is always up to the person who has MCS to advise their family and friends on what they can and cannot tolerate. I list Seventh Generation above because I know many moms with severe MCS who can use it without any issues. I also use it and have never had a problem but I prefer vinegar and baking soda since it costs less.
      Seventh Generation has an A rating on EWG and all ingredients are examined but the 2 you mention above are not listed. Can you share which products contain them?

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