‘Tis the season for giving, but if there’s someone with chronic illness in your life, you might not be sure what is an appropriate gift to give. Because of the limitations imposed by Lyme, old friends drift apart, new friends are hard to get close to, and even life-long family relationships can change.
Chronic illness is hard. It physically makes life seem impossible sometimes, and takes a great mental toll as well. Lymies need help -- lots of it -- and it can be difficult and awkward to ask for it. The hidden blessing in being there, though, is that you know what it’s like, and you know how to give back.
I’m not the sickest person I know, but I’m one of the most sensitive when it comes to food, chemicals, and environment. Maybe I’m the pickiest; I just don’t like feeling sick, and there’s so little within my power to alleviate my illness, if I find any way to regain control over my symptoms, I’m going to take it! I’ve tried to do Christmas with no gifts, because I didn’t have the energy to purchase reciprocal presents, and was too overwhelmed to deal with the received ones that I couldn’t use. However, it sucked a lot of joy out of the people who love to give, so I’ve had my share of awkward holidays trying to adjust, from one extreme to the other, in my new normal.
Now that I’m making exciting improvements in my health, I have a little more energy to think about shopping, giving, and spreading some joy again. On behalf of Lymies everywhere, I’d like to share some guidelines for how to be an awesome friend to someone with Lyme Disease (or any chronic illness, for that matter.) Please keep in mind that every single individual is unique in their tastes, needs, and sensitivities, so some people might not need to be so strict, while others have even more specific needs; the following are just some ideas about how you can give a thoughtful gift to the Lymies on your list.
Ask and pay attention to their struggles – this is a gift in itself, all year round. Practical ways to help (and things that won’t help) will be hidden in the details. Do they follow a special diet? Don’t give them food without knowing the specifics. Are they light and sound sensitive? Don’t buy them movie or concert tickets without asking. Do they have chemical sensitivities? Do they need help with specific chores, shopping, or transportation? Just listening and understanding beyond, “Hey hope you feel better” will go a long way.
2. Anticipate need.
Don’t make a Lymie have to beg. It is very difficult and humiliating to ask for help, especially when your illness is invisible. If they do not take you up on your offer, it might just be a bad time. Please ask again whenever you are able, on a weekly, monthly, or seasonal basis. Lyme is a long and chronic journey. They will never not need help.
3. Ask them to make and share an Amazon wish list.
Amazon wish lists can be private or public, shared, purchased in secret or openly, and sent directly to their chosen address. All kinds of options exist in the settings. Ask your Lymie to include anything they need – personal care items, supplements, treats, and gifts, big and small.
DO: shop around. Amazon certainly makes it easier to buy and send gifts, but they don’t always have the best price. Feel free to shop around for better prices or sales. Items like food and toiletries tend to cost more on Amazon, and might be easier and cheaper to buy at the grocery store if you live near your Lymie.
DO NOT: substitute products for a cheaper or different brand. Very often a Lymie chooses products because they have the exact ingredients, combinations, or sources that they have already deemed safe for use. Serious reactions can occur when a product that looks the same actually has a different ingredient or source (corn, soy, wheat, etc). This is the advantage of the Amazon list: a Lymie can read ingredients and approve ahead of time. If purchasing elsewhere, make sure the item is exactly the same.
DO: encourage them to use the comments feature on the Wish List – it allows them to specify whether they want/need an exact brand of an item, where you can find it locally, or if there’s a better price on a different website.
4. Think like a Lymie.
Before purchasing gifts, think about how a Lymie lives – low energy, overly sensitive, usually tired and in pain. Do they have room for it? Will it require regular cleaning or maintenance? Is it expensive to run? Is it noisy, flashing, spinning, vibrating, or otherwise over-stimulating? Does it need to be hand-washed? Most Lymies need things to be simple, durable, and self-maintaining.
5. Check the label.
To be sure your Lymie gets the most out of your gift and it doesn’t end up in the trash, consider ingredients. Personal care products should be free of any artificial dyes, fragrances, and preservatives. These are going to be more expensive and not as easy to find as the stocking-stuffer aisle. Lots of products marketed as natural, botanical, or plant-based are actually full of chemicals that will irritate and toxify.
A good place to rate products is ewg.org. The Environmental Working Group has Food Scores and Skin Deep product ratings for many items. You might be surprised how many of your “healthy” and “natural” choices actually aren’t.
Some common gift pitfalls are candy, gluten-free junk food, scented candles, lotions, air fresheners, and bath products that can cause adverse reactions, and difficult-to-wash accessories like fuzzy socks. Consider instead 100% natural incense, essential oils, and fibers.
6. Offer a return or exchange.
Consider keeping the receipt for your products and offer to return or exchange anything they can’t use. Invite them to tell you if something doesn’t work out, otherwise it puts a Lymie in a very awkward position of having no use for your gift, wanting to show true appreciation but not wanting to encourage you to bring them more, not having a place to keep it, or having to throw it out. Encourage them to share their gifts with others in their family or support group, so they feel okay about passing it on, and maybe even telling you how much joy it brought to someone else.
7. Go all the way.
This is a good gift-giving tip for everyone. Finish what you start. Don’t gift a product that needs other parts or more investment. Buy the batteries, some refills, the hardware. A great gift for a Lymie would be a cleaning service; but purchase a gift certificate enough to cover at least a whole floor, if not the whole house. Don’t hand over a $20 gift card for a $100 service, unless you know it’s something they are paying for anyway. A lot of Lymies are on a tight budget and in a lot of medical debt. They might not be able to pay the difference involved in using your gift. THE EXCEPTION to this is, of course, items you know they use and purchase on a regular basis.
One of the most devastating effects of Lyme disease is that it makes you feel like you’ve lost your identity. It steals your life, in so many ways. Something that can bring much joy to a Lymie is feeling like someone knows them, that someone sees them, that someone remembers and loves their personality. While generic greeting cards and gifts are of course appreciated, it is the ones with a personal touch that will really warm a Lymie heart! Consider buying (or making!) gifts that reflect their individuality – favorite animals, colors, hobbies, sports, places, etc.
9. Go Out / Stay In.
Every Lymie is different, has different abilities and different needs. Find out if they are dying to get out of the house and take them out! Or if they need to stay home, come over for a judgment-free night of talking, Netflix, or board games. Maybe they can compromise with a night in at your place! Whatever the circumstance, don’t stress about (or judge) the mess, the clutter, the unwashed hair, or the pajamas. Just BE. Together.
Please remember that needs are different: while a day at the spa, mani/pedi, or salon date might be refreshing for some, it can also be a social and chemical nightmare for others. Know your Lymie!
10. Adapt your environment.
If it’s a night in, making a Lymie comfortable in your space can go a long way. So many things ubiquitous in the home can trigger Lyme symptoms and brain fog, leaving a Lymie confused, exhausted, and sick just by walking in the door. If hosting a Lymie in your home, learn how to detox your space for a few hours – remove scented candles and air fresheners. Do not wear perfume, body mist, or hair products. Keep noises and lights soft or easily adjustable. Turn off the A/C in the summer and let in fresh air. Have slippers, sweaters, or blankets available to provide extra warmth.
If caring for a Lymie frequently or hosting long-term, consider using free-and-clear laundry detergent and skipping the fabric softener. Use natural cleaners and hold off on the hair products.
11. Drop a line.
Don't let this list intimidate you. If you don't want to shop, a bit of your time is the perfect gift. Lymies have phones, FaceTime, text, e-mail, messenger, Facebook, a home address, and a heck of a lot of time. Use them. More.
12. And the single best gift you could give to any Lymie? Watch “Under Our Skin” and tell them what you’ve seen and learned! All they really want is to be heard and understood.
Gratitude or Attitude?
Let me repeat, every Lyme journey is different, and your friends are going to have different circumstances and needs. Don’t be afraid to ask, and don’t be frustrated or offended if your gift doesn’t work out for them. Sometimes they have trouble showing their gratitude because they actually get overwhelmed with the simple emotions most people take for granted: joy for the gift, disappointment they can’t use it, guilt they aren’t more appreciative, stress that they owe you something in return, mind wandering about what do with it, where to put it, when to use it. Emotional regulation is a very real struggle when spirochetes are drilling into your brain! We had an entire year or two in our marriage where I would burst into tears every time my husband gave me a present that needed to be exchanged, because I felt so horrible. #13: Have Patience!
Lymies, what presents do YOU love? What hasn’t worked out for you? What do you struggle with when it’s gift-giving season?