- Tell us through your words, and show us through your actions.
We know you’re there through you saying “I’m here for you” but ultimately that falls short if we don’t see you being here for us. Tons of people have told me this and yet that’s the extent of it. Be more specific. The real support comes in when we can see your effort. People that call and say “I want to bring a meal for you this week, does friday work?” are the most intentional at this, and this makes it an easy yes or no for us in reply. Their support is undeniable because they didn’t just say they wanted to be there, but they jumped in and showed us they were!
2. Help us with day-to-day stuff. (help with the physical)
One of the best gifts I could ever receive is someone to come to my apartment and clean my bathtub, do a load of laundry, rub my feet, or vaccuum/dust. These things have all turned from super easy to very hard for me to accomplish…can’t bend down towards the bathtub because it adds pressure to the head pain, can’t scrub hard enough because I’m too weak…and when my husband is home he is more focused on taking care of me than cleaning. This shows us you know the battle it is for us physically and you want to help.
3. Be personal. (help with the mental/emotional)
Chronic illness is full of varying symptoms, many that last the entirety of the day. When you are in pain 24/7 it has a HUGE impact on your mind, and most of the day it’s a serious fight to remain in any kind of positive mindset. Be personal with your friends and family that are going through intense illness, as everyone usually asks about current treatments and symptoms, but very few look you in the eye and ask what the struggle looks like emotionally.
And let’s be clear…situations like this warrant great emotion. It is expected. This is a grief process we are going through as we are losing great aspects of our lives, abilities, and personalities. If you ask about the emotional health, be gentle and sympathetic, knowing it’s okay to feel whatever we are feeling at that time.
4. Do your research.
One of the best ways you can show us you care is by learning about our disease. This can also lead to learning about different stories told by others about their disease, because everyone can be at different stages. I’ve had several people question why I’m not better yet and then eventually lead into “try my supplements instead” or “maybe you have something other than lyme disease.” Or the common “well my uncle had lyme disease and he took antibiotics right away and it was gone in a month. You must be doing it wrong.” Do your research! Lyme disease sneaks into each cell and stays dormant at times, and every person has different aspects of their chemistry/body function that contribute to their healing process. I’ve had my Lyme since I was born through my mother, and have been bitten myself so if it’s taking a long time it’s probably because I have a ton to kill off!!
5. Don’t make jokes.
This is a hard one. Often times people try to lighten the mood because they are talking about a heavy subject such as chronic illness, loss, hard trials, etc. I would say, let the person going through it be the only one to joke about it, unless they say otherwise. Simple things for other people have become super hard for us, so trying my best to stay on my fourth diet, the strictest of them all, is not an area that would be okay for joking, especially if you’re able to eat most of anything, joking about my diet seems cruel. Along with not being able to eat anything that I love, the diet reminds me how constricting my illness is across the board, and how hard it is to watch others do things that I can’t. I’ve had people who’ve made light of my hard trial with my illness in general and….all I can say is these people are often those who are most ignorant on what is going on or don’t believe what is going on, and don’t want to do research. We are left reminding ourselves for weeks after, that “they just don’t know fully, they wouldn’t make fun if they knew the pain themselves, I have to trust the truth that I know.”
6. Ask the right questions.
A lot of things change with chronic illness, but I think this aspect is a good one to apply to anyone in general, because there is usually so much more going on beneath the surface of those we ask a general “how are you?” This question is good in intent, but I think that so many of the responses are generalized to “good,” “fine,” and “okay.” And these responses don’t tell us much. It’s also awkward for us to respond to “how are you?” in passing with a “I feel like death today” and be totally serious. Some better questions might include, “how are you feeling right now?” “how is the pain today?” “what was hard emotionally for you today?” “what symptoms also affect you emotionally?”
7. Feed us encouragement like it’s the only thing that’ll keep us alive.
Yes. Yes. Yes. I can’t emphasize this enough but if you ask anyone that is chronically sick, they will wholeheartedly agree. Texts, facebook messages, e-cards, little gift boxes, cards and letters, sticky notes on the mirror…anything that you can send even one sentence of encouragement through is so important…and so easy to do! When I first got sick, my whole world was turning upside down and it has felt like a nightmare since, but especially then. Such a new level of loneliness, isolation and invisibility are brought out during life with sickness, because you are shut in your room alone unable to do anything. My friends were absent, there were random family members who didn’t understand so they stayed away…it was the very lowest I’d been. I hated waking up every morning, the pain made me want to die, and my husband (then boyfriend) had to will me to keep going at all. You’ll be surprised at the difference encouragement can make in a person’s life. I have personally seen the opposite, no encouragement (in fact, degradation) in the life of someone who is chronically ill, and it has created such an intensity of loneliness and depression.
Community is created for the purpose of this very deed. To spur one another on in their journeys.
8. Don’t share your sick germs with us.
When we are already immunocompromised, getting the common cold is another layer of hell to us. Not only does it brings so much more pain, but now we have another thing suppressing our immune system and delaying our healing! Please and thank you let’s reschedule for when you are well!
9. Step into our world…since we can’t step out.
This one may be controversial to some, but it isn’t to me. I fully believe that accommodating to the needs of the sick in order to go visit them is a great thing. I’ve had family members who refused to switch out their deodorant for thanksgiving day, since chronic illness often makes you chemically sensitive (meaning when smelling certain fragrances/smells it makes you even sicker), and they told us they couldn’t be that inconvenienced so they didn’t come altogether. If you want to spend time with a chronically ill person, you have to step into their world, because they can’t step out. It’s fully possible for others, but nearly impossible for them. My mom has two or three great friends that she sees who are willing to skip their daily perfume or hairspray in order to spend time with her, but she misses out on so many friendships and community because the fragrances make her sicker. To me, if you love someone, this is a great way to show them. We’ve had to switch out so many products and cut back on several things we can do–it’s a 24/7 thing for us, not just a day. Stepping into another’s world can also bring a lot of understanding and knowledge on their day to day life. Walk a little slower so they can walk with you. Turn the tv brightness down so you can watch a movie together during their migraine. All acts of kindness that show you really care.
10. Don’t assume, but believe what we say.
We pretend we are well, but never pretend we are sick. When we’re around people who haven’t seen the full day to day journey, we most likely will always be pretending we are a bit better than we are, especially when we’re in public. It’s hard to go from 1 to 10 in symptoms in front of someone who has never seen that progression. and it’s also hard for us to handle them seeing that bare vulnerability. It’s so hard (for me too) to imagine what could be going on under the surface when someone is smiling and laughing, so don’t assume we are feeling great, and believe us when we say we’re feeling bad even if we say it as we smile. We are most likely pushing ourselves if we are out and about doing something, or even at home with friends! It’s very easy for people to say “oh you must be doing better!” just because we are out at the grocery store. My pain comes in waves through the day if it is not always there, so I might dance in the kitchen at 2:30 then be lying sick on the couch at 4. I’m not lying about how I feel, it’s just how my health is! (and NO it is not so great to be able to stay home all day and watch movies! That got tired after week one, and don’t forget to add the loneliness and pain on top of it.)
It’s also very hard to know exactly what someone is feeling unless they tell you in great detail. Even then, they know you can’t understand fully without you going through it yourself. It’s best to avoid phrases like “I know how you feel,” because chances are you probably don’t simply because everyone is different, every case is different, and each trial is different. I once had someone tell me that they almost had lyme disease so they knew how I felt. I’ll just leave that one there.
11. Don’t force your opinions, treatments or unsolicited advice on us.
If we have been sick for a while, chances are we know what we’re doing with our meds, supplements, herbs, etc., and we probably have great doctors who we hopefully trust. I can understand if you have something you think will really help the sick person, because why wouldn’t you want to share it if it could do some good? In that case, be careful how you present it. Let them know they can research it on their own and decide themselves to take it. Please don’t force any new treatments on us! Please don’t think we’re crazy when what you’ve tried hasn’t worked for us! It gets really frustrating for me, because I’ve had to do tons and tons of research for myself and my family on the ins and outs of products, treatments, how lyme reacts to what, what lyme does once it reaches the cell, why biofilm needs to be broken, etc etc etc, for the past 4-5 years, to the point where I’m telling doctors what I think is going on. Then someone comes along and tells me their “new product line will change my life” after learning about it and selling it for a month…It’s frustrating because we’ve put in so much work for our own health, so like I said, chances are we know what we’re doing. Also, unsolicited advice, when it’s said bluntly and forcefully, makes us feel like we are only a charity case to fix and not your peer, friend, or family member that you really care about.
12. Gifts mean the world.
Any kind of gift, large or small will mean so much. We can’t get out of the house usually, so sending something to us is a great reminder of our relationship and your support. Even a really short note can be a great gift! Anything to show you are there.
Some of my favorites include:
An encouraging t-shirt. Here’s one my husband gave me for Christmas:
This woman started her business during her battle with Lyme disease, to give others gifts during hard trials:
I just came across a wonderful gift box company yesterday called bearhugs–they customize a box for you to send, with items that can cater to your vegan, gluten free, and dairy free friends!
The main thing to take away from all of these points is to think about what you can do to show the chronically ill in your life that you care, in a way that shows you are trying your best to understand.