When My Friends Told Me They Googled 'Spoonie'

“We have some questions about spoons.”

I was on my way to brunch with some friends, and honestly for a minute I thought they were talking about the utensils.

“We saw you using the hashtag ‘spoonie’ on Instagram and we were curious so we Googled it. We understand it, but we have a few questions… How much energy is a ‘spoon’ worth? How do you know how many ‘spoons’ you have? How many ‘spoons’ will today use?”

I tried my best to explain. It can be hard to put into words, and I’m sure it sounds incredibly vague saying, “It depends on the day” and “I’ve learned how to sense it” but I (hopefully) explained it as well as I could. I talked about how I need to factor in things like showering, getting dressed, cooking. How I need to think about the amount of energy it will take me to get to and from an activity as well as to do the activity itself. How things like noise levels and the time of day will affect me. How I need to factor in at least one rest day, sometimes more, if I have been out of the house for more than two or three hours. Then we arrived at brunch, the conversation changed and we all talked about everything
and anything, and had a great time.

I still don’t think they know how much that meant to me.

Chronic illness can be a lonely, isolating experience. It’s something that you can’t fully comprehend until you’ve experienced it. To have people in your life who are willing to try to understand though, who attempt to put themselves in your shoes, is a gift. The fact that my friends would take the time to research my condition, to try to get it, and ask me about what they couldn’t quite figure out, means the world. My illness was a casual topic of discussion, along with a friend’s engagement, people’s work, films we’d watched, relationships, everything and anything we could think of. It made it feel wonderfully normal.

My illness is a huge part of my life. While it is just a piece of my identity, the treatments and tests do play a considerable role in my everyday activities. To have friends who accept this, but don’t define me by it, is something I am incredibly grateful for. They don’t complain when I have to veto five restaurants in a row because there’s nothing I can eat. They don’t object when I drink coffee or mineral water instead of eating/having cocktails because I have a strict nutrition plan, or if I have to leave early because I’m out of energy. They ask when I will have peak energy if we’re meeting for a coffee, and never make me feel like a burden for having so many factors to consider. I know that I am very lucky.

It must be tough being the friend/family of someone who is chronically ill, just as it is difficult for the patient. It’s hard to know what to do or say. I am chronically ill and sometimes I don’t know what to say! To anyone with someone struggling with health problems in their lives, my advice would be not to underestimate the power of small gestures. A text to see how they’re doing. Sending them the menu of where you’re going for lunch so that they can plan ahead. Offering to drive them because you know driving can be difficult on low energy days.

It doesn’t have to be grand gestures – the small, everyday things that show that you are there, that you care, mean the most. Being ill can be an incredibly lonely experience, and just the reminder that there are people in your life that are there for you can mean the world. Ask questions if you’re not sure about various aspects of their condition. They’ll tell you whether they want to talk about it or if they need to take a break from discussing it. Don’t forget that they still have so many other interests and topics of conversation besides their illness. I love that my close friends, while they will ask how I’m doing, talk to me about all the other things we used to talk about. My condition is part of me, but it does not control my identity. While it’s important not to ignore your friend/loved ones illness, it is also crucial that you don’t define them by it.

Above all, never underestimate the power of, “I Googled it and…”

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