Acts of Festive Kindness

♥ Christmas, Birthdays, and Other Holidays with MCS/ES ♥

For most people, these special occasions are times of joy and celebration in the company of friends and loved ones, but for people with invisible disabilities and chronic illnesses like MCS/ES, they can be sad reminders of the lives that we no longer have  access to.

We are still seldom  included in the festivities and are usually left alone to fend for ourselves. Unfortunately, since human beings are social beings, not everyone is well equipped to self occupy, and  some people become seriously depressed and even suicidal because of this.

To realize it’s because some friends, family, neighbours, and co-workers prefer to keep using certain products instead of using other products so we can safely be around them and enjoy their company,  makes it even harder for us, knowing they care more about the products they buy than they care about us. It’s a heart breaking thing to have to live with.

 ♥ Thankfully, not everyone chooses products over people  ♥

Before I became too chemically injured to socialize in crowds, I had a wonderful friend who happily made the effort to make her place and parties safe for me!

In 2005  her invites were all sent out with these words:

Hello my lovelies,
…
SPECIAL INSTRUCTIONS:

Please RSVP

Please BYOB

Please HFFZ (Honour Fragrance-Free Zone)

Please TTC (parking in the area is limited and I’m a public transit nut)

♥

Before the solstice party, she asked me about all kinds of things she was thinking of decorating with, to see if they would be safe for me. Things like:

Was a real tree going to be ok inside or should the tree be outside on the porch?

What about candles?

Were beeswax candles better than paraffin/petroleum candles, or would they too be a problem?

Are aromatic cider spices ok for you?

She asked many other thoughtful questions in order to make her place totally safe and comfortable for me. She learned by asking, and by taking note of my answers!

In retrospect, this might have been easier for her as she was also a homeopathic doctor in training, and as such, she was used to asking people questions, and as I was fortunate enough to be one of her practice patients, so she already knew a lot of things about my health and what kinds of products had adverse/disabling effects on me, plus, she also wanted to make her home healthier for herself!

♥ Her place ended up being totally safe for me! ♥

Until … Some of the guests arrived drenched in fragrances. There are always a few people who think requests (or rules) apply to everyone but themselves.

I tried to keep my distance, and even went outside for a while. I know my friend  would have asked people to leave, but as I  had already thoroughly enjoyed myself and the company of the people who did come fragrance-free,  and was  becoming tired, I decided I would leave and let the rest be as they were.

I was so happy to have been able to enjoy a few hours at my friends home, in the company of fantastic and creative people who did care! What a joy that was!

…

An example of an inclusive event for people with food and chemical sensitivities:
Thanksgiving dinner by EHN.

…

 Examples of how to plan events, be fragrance-free, and otherwise be safe(r):
Help for How to Be Fragrance-Free

When I was really sick with this condition that most people know little about and which can vary a great deal between people, I had friends and family who wanted to help but didn’t know how.

I was also too sick to discuss things most of the time, and/or to do the research to find the safest things possible that I might be able to use.

Some people offered to help but found the conditions imposed by severe  MCS/ES too onerous and time consuming and didn’t know where to start.

The best thing to do is ask the person what needed, perhaps have a list of suggestions of things you are willing to do, and how much time you are willing to spend doing them, but please remember that things will usually require going out of your regular ways to find things and services without accessibility barriers.

People with chronic illnesses often have cognitive challenges or brain fog  that can make it difficult to process information or think of things quickly, so extra time helps! Also, many of the changes we’ve had to make have come about over years of having to find ways to survive, so we may not remember all the steps that have been taken. Ask if it doesn’t make sense to you!

Sometimes the things needed are too expensive for a single person to purchase – perhaps you can offer to fund-raise to make a much needed purchase possible?

When people found out that cards and letters were too toxic for me to bring inside, they just stopped sending them. Most didn’t email either, which is a non-toxic alternative, but I  was too sick to offer them other alternatives (especially when they didn’t ask), and I think a lot of people just got paralyzed.

I have seen lists of ideas of things healthy people can do for people who have chronic illnesses, but most contain toxic suggestions. When we are telling others what we need, it might be an idea to somehow include some safe suggestions in whatever gets sent out, maybe in a humorous way, something like:

I would tell you all about my wonderful year, but it hasn’t happened yet.
I need help, and if you’d like to help, here are some suggestions
of what you could offer to make my year suck much less:
(ok, maybe that needs work)

…

As always, ask for details about specific issues because many of these things come in a wide variety ranging from toxic to safe(r)

– air and water filtration

– organic food delivery (prepared or fresh according to allergies and sensitivities)

– cd’s and dvd’s or internet streaming if the discs are too toxic

– technology
(research required to find safest, least toxic, lowest VOC, RoHS compliant products)

– e-books and gift certificates for them

– e-book  devices (or book downloads for computer)

– landline speakerphones

– laptops

Fragrance-free home visits for:

– hair care

– cleaning

– Scent Free Massage

– fragrance-free space and help with off-gassing new things
(washing them down, running the electronics till they don’t stink…)

I think the greatest gift would be if everyone switched to non-toxic and  fragrance free products so we could enjoy the company.

Here’s a few other ideas I thought of:

• Gift certificates for services by people who are fragrance free
• Shopping once a week, once a month or even just once
• Driving to appointments
• Picking up some organic food from somewhere tolerable
• A gift basket of favorite and tolerated supplements
• Researching safe options for us
• Advocating for us
• Organic clothing (research required – not all is as it seems)
• Water filtration system or delivery of safe water in glass bottles

Other links, but not necessarily MCS/ES safe:

Educating Loved Ones about Your Health During the Holidays
by Toni Bernhard
http://www.psychologytoday.com/blog/turning-straw-gold/201212/educating-loved-ones-about-your-health-during-the-holidays

When Poor Health and the Holidays Collide
by Toni Bernhard
http://www.psychologytoday.com/blog/turning-straw-gold/201211/when-poor-health-and-the-holidays-collide

HELP! I Love Someone With a Chronic Illness – What Can I Do?
https://www.linkedin.com/pulse/help-i-love-someone-chronic-illness-what-can-do-archilla-msw

Help for How to Be Fragrance-Free

Hopefully those ideas are helpful and can inspire people to come up with more. Some of the other links I had saved no longer exist, and others have too many tips that would be dangerous for people with MCS/ES. More is definitely needed in the way of safer products and materials, as well as how-to-do lists and advocacy to get manufacturers to make safer products and for service providers to offer safe services.

Perhaps the greatest gifts (and not just for those of us with MCS/ES, but for future generations too) would be for everyone to choose and use non-toxic,  fragrance-free products and materials, and for everyone to speak up and advocate for this to become the norm! We canaries are keeling over and need all the help we can get with this while it still makes a difference! Humanity cannot survive this 24/7 exposure to harmful substances. Respecting our needs also benefits Mother Earth and all beings who depend on a safe and healthy environment for life. We’re all in this together, and we can all make a difference.

♥ ♥ ♥