Ways to Support a Chronically Ill Loved One

There are as many ways to be chronically ill as there are to be human. There are people who struggle silently and seem to live seamlessly with chronic illness — the kind with whom you’d never know unless they told you. There are people who cannot help but struggle loudly, stuck in their homes or beds. And someone may be both throughout their lifetime, as illness is dynamic — despite beliefs that you can only get better or worse, really illness is like a dial for a stereo. (Remember those?) Some days it’s cranked up to eleven, others it’s maybe simmering at a 3 or a 4. Here are some things for people who really want to help (not just offer platitudes).

Learn Spoon Theory (or spell slots, or whatever metaphor works for your loved one)

Spoon theory was coined by Christine Misanderino, who lived with lupus. The story goes that Christine was in a diner with her best friend, who wanted to know more about her energy levels and why they ebbed and flowed so much. Christine purportedly grabbed spoons off of vacant tables, gave them to her friend, and said, that’s your energy for the day. Now take a shower. (subtracts spoon) Now eat breakfast. (subtracts spoon).

By this time, the friend was overwhelmed. “But I only have a few spoons left and I still have so much day to do!”

Now she’s getting it.

When you get deep into spoon theory, you learn about rationing spoons — planning ahead so that you have enough energy to do what you want or need to do. You learn about knife and fork corollaries — borrowing so many spoons from future me it cuts like a knife, and stick a fork in me, I’m done.

Other variations have borrowed from popular TTRPGs — when you are a spellcaster, you only have so many spell slots you can use before you need a rest. Whichever you and your loved one use, these metaphors can really help communicate. “Do you have enough spoons to go out to the shops with me?” “No, I’m sorry, I’m forked. Maybe we can plan for tomorrow?” That brings me to the next point:

Be flexible

I have seen a lot of posts about friendship, emotional labor, and The Friend Who Cancels All The Time. While it is true that sometimes it is flakiness, when you’re dealing with a chronic illness, chances are you become That Friend without meaning to.

Remember that the point of hanging with a friend is to spend time with that person. The specifics, the when, the where — don’t matter all that much. Instead of being offended when someone passes up an invitation or asks to reschedule or reformat a visit, understand that it’s not a referendum on you. Nobody wants to be sick enough they can’t do something with a buddy. That said:

Keep inviting!

Even if your loved one declines or has to cancel, don’t stop inviting your chronically ill friends to things. Chronic illness is extremely isolating — the feeling that people don’t understand, the feeling sick itself, feeling like the world is moving without you. Be the one who reaches out! And when you do —

Consider activities carefully

Does this coffee date really need to be a coffee date? Could you maybe grab some Starbucks on your way and bring it over to your friend’s house? I am a big fan of the errand hang — you know you both need groceries, so maybe you could go together? Low stakes, low pressure, and takes an additional item off your friend’s spoon-draining list at the same time. Chances are, your chronically ill loved one is not up for hitting the club (if they are, more power to them!), but they might love to have a drink with you at home. There’s also beauty in being in the same space and doing nothing together. In college, we were all about study dates and hanging in the same room while scrolling Tumblr. (Do people still Tumbl?) Why can’t we do that as adults?

Learn about their condition — independently

STOP. Whatever you were thinking of asking them, don’t. At least, not yet. There is a lot of information on the internet. Do some reading first. There’s nothing wrong with asking about their experience with an illness, but peppering them with 101 questions when you can give it a Google is draining. I love to answer questions, but not everybody does.

Trust them

Everyone knows their own body best. When they express a limit, need to take a break or medication, or just plain say something about their disease, believe them. It sounds so elementary, and it is. It’s the easiest thing to do. But obnoxious TV shows like House really hammer home the idea that everyone is lying about their problems, and snarky healthcare professionals on Twitter bring medical gaslighting closer to home than ever before.

Elevate their voices

Everybody needs a friend to speak out sometimes, and the best thing you can do is say, “Hey, my friend just said…” If we have visible disabilities, often people will default to speaking to the person we’re with, as though we can’t understand them. Or there might be times we aren’t making ourselves as clear as we want to be — frustration, anxiety, and fatigue will do that. Don’t speak over or for us, but you can gently suggest alternatives.

You might see someone online or in person making fun of or minimizing chronic illnesses. That’s when it’s time to step up and speak out. “I know you think you’re being funny, but I’ve seen what chronic illness does. This isn’t cool.”

These are just a few ways to support and uplift your chronically ill friends. Others have infinitely more ideas. Don’t forget to check in with your chronically ill companions.