This is a topic near and dear to my heart as I have a chronic autoimmune disease. Oftentimes people don't understand the struggle, which is totally expected but I've noticed it's rarely touched on all the same. So, coming from your friendly neighbourhood Spoonie (read all about Spoon Theory here) and with the help of a couple other Spoonies, I've compiled some handy dandy tips for tending to and possibly better understanding your chronically ill loved one.
1. Just because you can't see it, doesn't mean it's not there. The reality with a lot of us is the disease we suffer from doesn't yield completely obvious physical symptoms so we feel like our pain is pretty invisible and sometimes even that we shouldn't feel the way we do because you, the bystander, can't see the throbbing joints or the upset stomach or the way the medication reacts with our body chemistry, and the like.
My friend Samantha who has diabetes put it brilliantly: "Invisibility is a huge thing with having diabetes, or any chronic illness where it is not blatantly obvious to others. Sure, people see me testing my blood sugar once in a while, but they don't see how much that really effects me. They don't see the gallons of blood (literally) that I have to sacrifice throughout the years in order to just eat. They can't see when my eyes are blurry, or when my stomach hurts from ketones, or when I'm low. They can't feel the confusion and brain fog I have when I'm low, and have to pretend that everything is okay. So yes, I feel invisible. And because my disease is invisible to the naked eye, that makes my pain feel invisible."
2. Understand that if there are preventative measures that can be taken, they're probably already being taken. Autoimmune diseases tend to be rather fickle. You could do one thing that alleviates pain or discomfort from one symptom and it doesn't work as effectively as the last time you tried it. Or medication isn't something that helps this particular symptom or what have you. There are so many variables that can contribute to flares or episodes.
Saying things like:
"did you take something for it?"
"Maybe if you slept more.."
"If you were more active..."
No. Just stop. Do not pass Go, do not collect $200.
3. Stop pretending like your Spoonie's condition will improve by some magic cocktail of medication and pixie dust. coming from a fellow chronic sufferer: "I wish that people would realize that I might not ever get better.. I hate hearing people say, get better soon or feel better." Chronic means "habitual, recurring, constant, inveterate", understand that remission in chronic pain is especially unlikely. Hearing things like "oh, you'll feel better when.." or "things will get better when.." is incredibly exasperating, especially when all options have probably been exhausted. acknowledge and be respectful of your Spoonie's pain.
4. If you see something that can be done, do it. Coming from a family friend : "Don't
ask the person (or family) what they need--they often are so
overwhelmed that they don't know or can't pick just one thing. Be
proactive and do something for them--mow the lawn, walk the dog, take
the kids to the park, bring dinner without being
asked, wash their dishes, clothes, mop the floor, take the person for a
drive--just to get out of the house."
5. Let your Spoonie do what they are capable of, especially if they feel well enough to do it. my friend Christina explains it excellently: "don’t try to stop me from doing something if I’m tired or hurting or low
on spoons. I need to keep doing the things I’m able to so that I can
feel like I’m not completely helpless."
6. by the same token (also from Christina): "accept when I say I can’t do something, and either do it for me if it
needs to be done right away (cleaning the litter box or preparing food)
or leave it for when I can do it (folding clothes or sweeping and
mopping)."
Kind of goes hand in hand with the "be proactive" point. Be graceful and understanding and helpful. we need lots of help to make things run smoothly.
7. We're not using our sickness to our advantage to avoid responsibility or activities nor are we faking it. I mean, of course, there's always gonna be someone somewhere doing it but a majority of us genuinely wish we could do all the things a regular functioning person can and attend every event. we just can't. we're not being standoffish. I know for me personally, it makes me sad and a little angry at myself if I can't make it to something or hang out or do whatever I want when I want. We want to be able to but we really just are not able sometimes.
8. Oftentimes just sitting and hanging with your Spoonie for the night instead of asking them out makes all the difference. think about it, they're in pain more often than not. why not watch a movie with them at their house? that kind of thoughtfulness makes all the difference in the world. Even sometimes receiving a text or a phone call because someone has been thinking about you is a huge pick-me-up.
9. ask questions if you don't understand or don't know but never blatantly assume anything. even if you're a friggin' physician, you may know the science behind an illness but you don't understand the emotional toll it takes on the individual from their point of view. ask them about it. most are happy to explain and assist in shedding light on their daily struggles.
10. Relating to a Spoonie via a friend or relative who's chronically ill is a good start but try to be there for the individual and their personal experience. "oh my grandma’s dead obese cat’s grandma’s uncle’s brother’s dead grandpa who was obese had diabetes too." Nope. just nope. Even an incredibly peace loving, non-violent person will wanna punch you in the gut for that. On the other hand, it helps to know that the sufferer's disease has awareness.
11. Don't minimize the small struggles a person with chronic illness faces day to day. all those small hurdles are a giant obstacle in the grand scheme of things. they add up quickly. we have to budget our energy and wellness like someone would a budget their income.
12. DO NOT LAUGH AT A SPOONIE BUT LAUGH WITH THEM. Jokes can be hurtful but understanding their particular sense of humour to cope can be a great support.
13. Just be understanding. Extend the same kindnesses you'd want extended to you. be patient, be available as you're able, be open, just listen. my ultimate advice to anyone is think about it if you were the one dealing with -insert illness here-. it's like dragging a ball and chain around everywhere you go. it's always there. it makes you feel uncomfortable and self conscious sometimes. be courteous.
And shout out to all the friends and people caring for a loved one who deals with chronic illness/chronic pain, you are our rocks, our sanity, our grace, and our bodies when we're running low, running on fumes, unable, or unstable. We appreciate your help and constant support whether it's giving us a hug or doing everything for us. It takes a lot of guts and moxy to do what you do. hats off to you.
