There are lots of articles out there on how to survive the holidays as a person with a chronic illness (like this one), but not many for their loved ones.
The holiday season is full of wonder, excitement, family, friends, presents, parties, and a billion activities to go to and do. Friends and families host parties, there are school and church Christmas programs, local Christmas events, Christmas concerts, company dinners, Christmas light displays, parades, shopping, eating, well...you know! I am a HUGE lover of the Christmas season and have always loved to cram as much into the season as possible.
But, the holidays look and feel entirely different to a chronically ill person. Everyone is different and I can not speak for everyone. But, I have some thoughts from my personal experience and from picking things up from fellow sufferers.
The main thing that comes to mind is that during this season the feelings of isolation and loneliness magnifies. Most of us can only do a fraction (if that) of the seasonal activities listed above. Many folks can not leave their homes or even beds. Most can not go the parties or concerts because of their chemical or environmental sensitivities. Going out can cause overstimulation and feelings of being overwhelmed, not only by crowds, but by smells,toxins, and loud noises. It get's really really really depressing. Believe me, I personally shed a few tears over this just the other day.
The desire to be normal and to do ALL the Christmas things is raging through us. We want so desperately to go to parties, to host a party, but all our energy is normally tied into trying to survive the season. The invitations stop because people remember that you had to decline the last two parties or they know you are "sick" and will probably say no. Please don't do that, the invitation is precious to us. We long to be still wanted. Even if we can't make it, just knowing that we were invited will have us floating in the clouds for days.
If you invite a loved one to your home and they can not make it due to a bad day or that they know they can not go into your home (due to a previous reactions etc), please don't be offended. Your loved one most likely really wants to be there. But, they may not be able to due to a chemical or toxin in your home. It's not you, its the toxin. I know it may be difficult to not take it personally, your loved one can not help it. But, you, as the home owner, can take steps to make things easier or healthier.
There are things you can do to extend hospitality to those who are "sensitive". If you (as a non "chronically ill person") do get lucky and are hosting your loved one OR you want to make your home a safe haven for your loved one, I have listed some thoughts below.
Thoughts on hosting a chronically ill/chemical/environmentally sensitive loved one.
(For now on, the "chronically ill" family member or friend will be called "Your Person" or "YP". I really have to find a better name that covers all the illness that is not so depressing!) Most of these thoughts are coming from a CIRS/Lyme sufferer or a "Moldy's" perspective, but many of these apply to other health struggles.
-Listen to the needs of your person and ask as many questions as you need to. I should not really have to expound on that one. Other than, really open yourself up and be willing to listen and hear YP's heart and needs. That is one of the biggest ways to show love to YP.
-Mold Testing. This is a big one. If you plan to have Your Person stay over night or have them in your home frequently (like if Your Person is your adult child, in-law, grandchild, best friend, etc.) consider testing your home for mold levels (if YP is a "moldy"). Most "moldys" (with a few exceptions, so ask YP) do great in homes that have ERMI scores of <2. You will not have to hire a professional home/mold inspector (most "moldys" know that most of them are unreliable or do not have a clue about this illness etc.), you can do a simple "dust" test through a lab called Mycometrics.
It's not cheap, but isn't your loved one worth it? Once you have the results, YP will be able to have a good idea if they can enter your home safely. There may be a slight possibility that YP will get some type of "hit" in your home even if the ERMI score is good. Below are more tips on other factors that may affect YP.
-Be aware and honest about any water damage in your home, when it happened, where, and how it was cleaned up. Water damage includes leaks under sinks and any types of visible mold. This is also very important. YP (especially "moldys") need to have your respect and total honestly. If you do not know if your home/rental has had any water damage, just say so. You can ask your landlord, you may not get very far, but at least you asked. :-) It is also really important for YP to know if or how you cleaned the water damage. You don't need to go into tiny details, just be open to questions YP may ask. Again, if they opt out of entering your home, it's not you (unless you refuse to do any of this and have caused trouble in the past...then you are dealing with more than just a toxin in the home - which may be another future post.)
-Basic House Cleaning. Do not clean with chemicals. Please protect Your Person from chemical reactions by cleaning your home with chemical free cleaners. This part is so easy and you may find that you react less too. :) Instead of Clorox, Lysol, chemical sprays, scrubs, etc., use essential oils, vinegar, baking soda, lemons, salt, water, etc. Here are some more thoughts on chemical free cleaning and ideas.
-Do not burn candles other that beeswax (if your person can even handle that.) All candles except natural beeswax, palm oil, tallow, and maybe soy are DANGEROUS to anyone with any type of sensitivity. Again, ask YP what they can handle. There is something magical about beeswax candles anyway...you might like to give them a try even when YP is not around. ;-) I realize that your scented Christmas candles may be a huge part of your decorations, but please be aware how dangerous these can be to YP. Beeswax burns clean. You can also diffuse essential oils for fresh holiday scents (but again, double check if there is a scent that negatively affects YP.)
-Be aware of chemical/synthetic scented items. Be aware and learn how they might affect Your Person. Perfume, cologne, shampoos, lotions, body washes, soaps, candles, air fresheners, or anything that has synthetic smells or chemical ingredients. Some folks are even extremely sensitive to spices. Just ask to make sure. Personally, all chemical smells send me down a spinning black hole. It's painful and at times takes me several days to recover.
-Recent or Current Illness. If you or anyone in your family has had an contagious illness with in the last 24/48 hours, please let YP know. They can then make a decision. It is not fair to them to not inform them what kind of bug was recently floating around. Sometimes we gather and the next day you find yourself not feeling well, don't worry about that. It happens. But if you know you or a family member has had a cold/flu/stomach bug/ring worm etc etc... be honest with YP. You never know how something that may have mildly affected you will affect YP. Their immune system is handicapped right now or may even be non-existent. One more note....if you have had cold sore breakouts in the past or have a current one...don't kiss YP or touch their face...please. :-)
-Be willing to make a "safe" food dish for your person. Even if they insist they don't mind bringing their own food. Or instead of making whole dish, have something "safe" on hand as a small treat. As much as making something without dairy, wheat, soy, sugar, corn, nuts, eggs, nightshades, and yeast (or more!) sounds overwhelming, take a deep breath and open up Pinterest. It's really not that hard and if you keep it simple, less stress for you. :) If you are laying out a buffet or even a simple party spread, label items that are "safe" and watch for potential cross contamination issues. Appoint a helper to set up an allergy friendly table or corner of your spread. You as the host/hostess do not have to do everything to get ready for YP, delegate! Most of the time YP will be willing to bring something or their significant other or caretaker would also be willing to help out with this. Oh, and water. Have some filtered/bottled water on hand. Do not give YP tap water or refrigerator "filtered" water.
- Presents: This is a easy one but yet a little tough. If you are like me, I LOVE LOVE LOVE to give presents and have a hard time restraining myself. This year I have realized several things about receiving gifts. Do not give your person thrifted items from the thrift store or your basement/attic. That means no used books or even antiques! *such weeping* (Family heirlooms and Moldys may be a future post, YP may be able to receive them at some point after careful evaluations and cleaning.)
Follow the scented items section above as well as food. BUT...there are some treats out there that are safe if YP can handle a tiny bit of sugar for a treat. Like coconut based caramels, dairy free M&M like candies, and dye free/corn syrup free candy canes...oh YUM! Some people out there are also extremely sensitive to chemicals on clothing etc. I am not, so I am not sure what say about that. But, ask. Ask what is needed or what would bring some joy into their hearts. Sometimes a gift card to a health food store would be super awesome (supplements are expensive!) Some new books (because YP has to buy all new ones after they lost their old ones -totally heartbreaking if they are a book lover), audio books, kindle books, music are some ideas. Set up an online fundraiser (or any type of fundraiser) to help raise funds for treatments and medications/supplements (I can guarantee YP has suffered greatly financially from their illness and insurance does not cover most mold/lyme medications.) If YP is crafty, find something they can work on to keep them from getting so bored. Stuff like that. Be aware of items that were in stores that are super "smelly", like a craft store or a area of the store that is filled with candles etc. OR a store that has been water damaged. Use your own sniffer and try to think like a chemically sensitive person. Some items take a long time to "off gas" and you might need to set it outside for a bit. If your home is a place where YP takes "hits" or has a high ERMI score, order presents online and have then shipped directly to YP. It is still a little risky, but so far I have not had any trouble with Amazon.com or places like that. But, again, everyone is different. Just ask YP or YP's caretaker or spouse for ideas, needs, wants, or tips on what is best for them.
-Have a quiet room ready. Everyone is ready to take a nap after that huge Christmas meal, but not everyone does. There are times during a party that YP may get over stimulated or just needs to rest for a little. Set aside a quiet area that YP can retreat to. A small area that is cool/warm, dark, comfortable, and with good ventilation.
-Research your person's illness and educate yourself. Congratulations! You already are if you are reading this. Thank you! Get to know a little or a lot about YP's illness, especially if you are a close relative (like a parent, in-law, etc.) This will not only help you love and understand YP better, it will also help YP in their healing process. The stress of fighting with ignorance or unwillingness hinders healing. Stress hinders healing period. You do not have to know everything, but just enough to understand that it is not "in their heads" or whatever you might have thought it was before. It also shows some respect to YP. They are working so hard and it is so stressful knowing that your family or friends do not bother to even ask what you have.
-Dinner Conversations: Please don't bully or allow anyone at your party to bully YP. YP already feels like a burden and most likely has gone through enough emotional trauma from insensitive people. Do not pressure them about getting a job, getting out more, sucking it up, or just get better already. Seriously, don't let it happen. Instead, talk about your lives, events, whatever. Include YP, you may ask about what they want to do, if they have dreams or ideas to continue their dreams while healing or when they progress more. Most of us had the majority of our dreams totally smashed, had to stop working or going to school, hobbies put on hold or may never be able to get back into them, etc. Just be considerate. :-)
-Expectations: Do not expect YP to last the entire party. They may need to leave early or lay down during. If they feel fine and make it through, rejoice with them, but understand that they will crash shortly after they get home. Be gentle. Do not expect them to help you clean up (they want to help, believe me). Do not expect expensive presents from them (they can barely afford their supplements and doctor visits.) What you can expect....is that they have huge hearts and love the people they are with. They want to give so much to all their family and friends, but during this season in their life...all they can give is their love. Receive that with openness and gentleness. If their gift is stepped on, abused, or taken advantage of, they may never offer it again. Not because they don't want to, they just emotionally or physically can't.
I think that is enough for now. So many words, but necessary ones. If you have any questions or suggestions, feel free to leave a comment below. You will find Your Person or even Your People will be open to questions and will be willing to help you understand.
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We hope you all have happy and healthy holiday season! Merry Christmas!
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