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15 'Code Words' You'll Only Understand If You're a Spoonie

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When you live with chronic illness, your experience is often so unique that it can be difficult for those who are generally healthy to understand what it’s really like. But explaining the full truth of how you’re feeling or what you need in that moment isn’t always practical or realistic. Sometimes, you may be too overwhelmed with symptoms to even think straight or keep yourself upright or conscious – much less communicate the complex nature of your condition. Other times, you simply may not feel comfortable going into detail about your health with the person you’re with. Whatever the reason, those with chronic illness may not always disclose the entire truth – which is absolutely OK.

Instead, many of those with chronic illness may have developed certain “code words” or phrases that fill in for the greater truth of what they’re experiencing. To the average person, these words might not sound like much, but to fellow spoonies, these seemingly simple phrases pack a lot of meaning.

We asked our Mighty community to share something they say that’s “code” for something else, which only their fellow spoonies would understand. Let us know in the comments below if there are any additional “code words” you and your friends with chronic illness use that you think should be added to the list!

Here’s what our community shared with us:

  1. I’m tired’ doesn’t always mean tired… it often means I am so exhausted I can’t bear to take another step. Even breathing is exhausting sometimes.” – Joanne S.
  2. ‘I’m done.’ I no longer have the mental or physical strength to deal with whatever this situation is. I have to retreat and take care of myself. I’m just done.” – Ashley T.
  3. I’ve run out of spoons today.’ Some people with chronic illnesses refer to themselves as spoonies. You start with a certain amount of ‘spoons’ for the day and use them up as you use energy to do activities like shower, cook or clean, etc… other people have no idea what we’re talking about when we mention using spoons.” – Abby B.
  4. I’m gonna go to bed…’ Not to sleep. But very few know this!” – Sharon M.H.
  5. When someone asks me how I’m doing and I say ‘I’m hanging in there’… it really means I’m hanging on by a thread and on the verge of breaking. Most everyone who doesn’t get it thinks that it means I’m doing OK.” – Nicole C.P.
  6. I’m normal people sick,’ meaning I’ve got a cold or other common illness on top of my usual symptoms.” – Laura N.
  7. I’m sore’ means ‘if you touch me I will cry. I am in so much pain that noise hurts. I want to curl up in a ball and cry.’” – Carrie B.
  8. ‘I’m fine’ or ‘I’m good’ with a forced fake smile which actually just means I am functional today at best. Sometimes it is simply an automatic response used when someone asks ‘How are you?’ Reality is anything but. Sometimes I even manage to ask how they are doing too.” – Jennifer S.
  9. “‘How are you doing? Are you happy?’ ‘I’m OK…’ We all know what that really means.” – Katrina C.O.
  10. I have to go home.’ Means I’m done, now, not 10 minutes from now, now. I need to leave or I am going to collapse.” – Karen S.
  11. The fog is rolling in.” – AnneMarie G.
  12. ‘Give me a second, I’m malfunctioning today.’ Whenever I’m having brain fog, spacing out and when I can’t walk straight and when I’m continuously dropping things.” – Nikkie H.
  13. ‘I’m not feeling very well today’ is code for ‘my pain level is at a 10, please don’t try to talk me about it.’” – Lillian E.
  14. I can’t people right now.’ This is code for several things. On high pain days when I just need to be at home or really low mood days when depression takes hold and I don’t have the energy to be around people.” – Vicki L.G.
  15. The fog is strong with this one.” – Jillian J.

Getty Image by SanneBerg

Originally published: July 6, 2018
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