Suffering the Silence’s new docu-series, Trust Me, I’m Sick, has a lot to tell us about being an ally to spoonie friends. One of the contributors, Cassandra Rush, hit the nail on the head when she shared what it’s like to be invited out by friends:
“Yesterday my friend asked me if I wanted to go to dinner. I sat there for 20 minutes fighting with myself about whether or not I had the energy to get up and just sit at a table and talk to somebody. She doesn’t think about that. She just thinks ‘I want to kick it with my friend. Let’s go get some dinner.’ But for me, this is me fighting with myself about whether I can physically get up, sit in a car, get up, sit at a table, eat some dinner, and talk to my friend. Like that’s too much energy for me to think about right now.”
Navigating friendships through illness can be sticky, but we feel grateful every day for the wonderful Friends who keep us Fighting! To be a great Friend to a spoonie, here are some things you might want to know:
Keep inviting us even when we say no!
It breaks our heart to have to cancel. We wanted to go see that show or try that cool restaurant just as much as you did, not to mention how much we miss you! Sometimes, when we have to cancel too many times, friends will just assume that we don’t want to go out. Please keep inviting us! Even if we can’t follow through that time, having the invitation helps us to feel loved and connected. Plus, it gives something to look forward to on tougher days.
Be open to what we can do
If you find that your spoonie friend has to cancel more often than not, maybe the way you hangout isn’t very accessible to them! Ask if there’s an activity they could do even on a not-so-good day. Maybe chatting at home or drinking tea and watching a movie could work. Or cooking a meal together and resting with a meditation video. Whatever works for your friend, it means so much extra to know that someone is willing to change their hangout habits to make socializing accessible! And you may find yourself surprised at how nice these quieter moments feel!
Make your own needs known
You should also be an equal part of the equation! Don’t forget to assert when you need something. It helps take the awkwardness away (spoonies tend to be self-conscious of how often they have to ask for help or accommodations), and make you feel more heard and cared for.
Listen, believe, and validate
Sometimes, life as a spoonie is really challenging. It can go a long way to have a friend ask “how are you really doing?” or “is there anything you’re needing to process right now?” Choose moments that are specifically set aside for more lighthearted hangouts so that it doesn’t all feel heavy, but when you are up for it, try to engage in the deeper vulnerability. It can hurt a little to hear about your friends’ pain, but will bring you so much closer together, and make it easier to share when your life hits a rough patch.
Similarly, using spoonie language helps us to feel understood on a deeper level. It feels wonderful when, after I’ve chosen to stay home all day, a friend asks “have you gotten any spoons back?” Or if I did choose to go out and am fighting fatigue and pretending I’m fine, hearing “Hey, that was a lot. Did you lose too many spoons? Anything I can do to help?”
At the end of the day, just be kind! Practice the skills that make us all better friends — listening, communicating, and empathizing.
Do you have a friend who goes above and beyond? We’d love to know what they do so well in our Friends in the Fight facebook group!