Do you have a loved one struggling with a chronic illness and do not know where to start when hosting them for a holiday? Are you a warrior and wish you could find a way to help your friends and family understand your needs during the holiday season?
I know for me, I did not want to give up my normal holiday activities. So many other things were taken away during my illness, I refused for my holidays to be taken away too. But how can our loved ones help us out during this time? How can you show you care when your loved one is struggling with an illness?
Since we are in the middle of the holiday season, I thought I would share a few thoughts on hosting a “Moldy”, a loved one with Lyme or other chronic illnesses, or anyone who is chemical/environmentally sensitive.
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 too 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, light displays, parades, shopping, eating, the list is endless! I am a HUGE lover of the holiday season and have always loved to cram as much into this time of year 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 warriors.
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 warriors can not leave their homes or even their beds. Most can not go the parties or concerts because of their chemical or environmental sensitivities. Going out can cause over-stimulation and anxiety attacks, not only by the crowds, but by smells, toxins, and loud noises. It gets 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 and to host parties, but all our energy is normally tied into trying to survive the day…let alone the whole holiday 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 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, it’s the toxin. I know it may be difficult to not take it personally, your loved one can not help it. But, you, as the homeowner, 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.
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 challenges.
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.
This is a big one. If you plan to have Your Person stay overnight or have them in your home frequently (like if YP 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 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 SO very important. YP (especially “moldys”) need to have your respect and total honesty. 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 any 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 a future post.)
Basic House Cleaning
Do not clean with chemicals. Please protect YP from chemical reactions by cleaning your home with chemical free cleaners. This part is so easy and you may find that you notice a difference in your own health. Instead of bleach products, antibacterial products, chemical sprays, scrubs, etc., use essential oils, vinegar, baking soda, lemons, salt, water, etc. If you are unsure if the products you normally use are safe or not, just ask. Here are some more thoughts on chemical free cleaning and ideas.
Do not burn candles other that candles made of a natural wax (if your person can even handle that.) All candles except pure beeswax, tallow, and soy are DANGEROUS to anyone with any type of sensitivity. Put away all paraffin based candles (more on that here). 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. Pure beeswax and safe wicks are 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 YP. Perfume, cologne, shampoos, lotions, body washes, hand soaps, candles, air fresheners, laundry detergent, dryer sheets, or anything that has synthetic/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. Here is some helpful information on holiday scents and a recipe.
Recent or Current Illness
If you or anyone in your family has had a contagious illness within the last 24/48 hours, please let YP know before the arrive or come into contact with you. They can then make a decision. It is not fair to them to not inform them what kind of illness 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/ringworm 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, just don’t.
Be willing to make a “safe” food dish for your person. Even if they insist they don’t mind bringing their own food, offer something. Or instead of making a 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 pesticides (or more!) sounds overwhelming, take a deep breath and open up Pinterest. It’s really not that hard and if you keep it simple. 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 a “safe” 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. Having filtered water on hand is a must! Have some filtered water or bottled mineral water available. Do not give YP tap water or refrigerator “filtered” water.
This is an 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. The last few years I have realized several things about receiving gifts as a mold warrior. 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 the food section. 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, other vegan Christmas candy…oh YUM! Ask YP what ingredients they need to avoid and then it’s off to search for stocking stuffers! For the foodie, a Thrive Market membership would be fun OR a local CSA subscription. For those working on building their healthy home and kitchen, MightyFix subscription would be an awesome treat for them! Some people out there are also extremely sensitive to chemicals on clothing etc. Look for organic and natural fibers. Ask what they can wear and what they need. Ask what is needed or what would bring some joy into their hearts. Sometimes a gift card to their favorite health food stores 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.) They may need help with gathering up needed and safe bedding. 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 an 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 personally have not had any trouble with Amazon.com or places like that. But, again, everyone is different. Just ask YP or YP’s caretaker/spouse for ideas, needs, wants, or tips on what is best for them. Don’t forget the kids! Here are some great ideas for the kids from MightyNest! Or more from Imagine Childhood!
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 they just need to rest for a few minutes. Set aside a quiet area that YP can retreat to. A small area that is cool/warm, dark, comfortable, and with good ventilation.
Many warriors are sensitive to EMFs and feel terrible when they are in a room/home with WiFi. It’s becoming impossible to avoid it when you are near civilization. But, it is something we should all be aware of and compassionate to those who struggle with this type of sensitivity. Sometimes I wish we could plug you into our bodies so you can understand what it feels like to feel fried by all the technology around us. If YP has this sensitivity, please consider turning off your WiFi for the time they are there and finding out what else you can do to alleviate their suffering while they are in your home. Here is one family’s story of going from “wireless to wired” to help you learn more about this.
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 if you are a parent or 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 and in many cases prolongs it. 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. If you refuse to acknowledge YP illness or them as a person, that is extremely disrespectful and harmful. 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 or how you are doing.
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 to just get better already. Seriously, don’t let it happen. Instead, talk about your lives, their lives, events, the weather, or whatever. Include Your Person. You may ask how they are doing, if they learned anything new lately, about what they want to do as they grow healthier, 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. You are dealing with Warriors, they have feelings and have so much to contribute to the world. They are not done yet, so don’t limit them or make them feel small because they are “sick”.
Do not expect YP to last the entire party. They may need to leave early or lay down during the festivities. 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.
It happens. Be prepared that YP may need to cancel your coffee date, outing, or attending your gathering. Be open to that possibility and do not force them to ride the guilt train. Come up with a plan B for that day or plan for another time. Warriors can not see into their future any more than you can, but they do know that it’s either going to be a great day or a really shitty day. If the day you have planned falls on a bad day for them and they need to cancel, respect that. They don’t hate you or are trying to get out of spending time with you. They are feeling so bad that they know they can’t go out and handle all the battles that they have to fight when they are out and about. Accept their need for that day and affirm that you love them. Then, try again another day.
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.
We hope you all have happy and healthy holiday season!