I am a spoonie! If that word resonates with you, chances are you are too. If you’ve never heard of a spoonie before I welcome you to check out “The Spoon Theory” by Christine Miserandino. Spoonies are Chronic Illness Warriors and the Spoon Theory uses spoons as a metaphor to explain what living with a chronic illness is like.
Having a good day full of energy? You have tons of spoons to spare. Feeling to sluggish that simply taking a shower is difficult? Looks like you’re low on spoons.
These days I’ve been incredibly blessed with plenty of spoons to spare, but I still need to actively make my health my number one priority. I always will.
Any spoonie can attest to being on the receiving end of some frustrating statements. While we know that you probably mean well, your words can be baffling at the best of times and heartbreaking in the worst. It leaves us feeling awkward, isolated and at a loss for words. And so, to help prevent this in the future, here are:
7 Things You Shouldn’t Say to a Spoonie
“But you don’t look sick.”
This statement makes it feel like you’re skeptical and puts us in a strange, defensive position. What exactly should a “sick” person look like? Should we be immobilized, permanently hospitalized, various shades of green…? Do you need further justification or proof? What is this statement trying to accomplish?
“But you were fine yesterday.”
It’s important to understand that spoonies need to listen to our bodies and that our health takes precedence over everything. If we don’t take the best possible care of ourselves it can go downhill pretty quickly. Making us feel guilty for addressing our needs doesn’t help us feel any better about the situation.
“You’re too young to have all of these health problems.”
Young people who are experiencing a chronic illness are likely pining for the carefree days promised to them by their youth and mourning the loss of their wellness. Life is no longer as easy as it once was and things that everyone typically takes for granted now take us a lot of forethought and consideration to accomplish. We are well aware of our age and, like you, we didn’t expect to experience health issues until we were old and grey. No need to point it out for us.
“I wish I had Graves Disease so that I could be skinny.”
Graves Disease is not a temporary weight loss program. Whenever the numbers on the scale go down we immediately begin to worry. The physical and psychological stress that a Graves flare-up creates is not to be taken lightly. The permanency of any autoimmune disease, remission or otherwise, is no laughing matter. Don’t diminish it’s severity by thinking of it as a beach body program and never wish ill on your body or your health!
“I knew someone with the same thing and they didn’t have all these problems.”
That’s great! It’s lovely to know that someone else didn’t have a difficult time. But please understand that each of us has a unique experience – there is no one size fits all in the spoonie world.
“It could always be worse.”
We are well aware that there are worse situations to be in and worse illnesses to have. That doesn’t diminish our experience, nor does it take away our right to feel bad, sad or angry. In fact, working through our emotions and being open and honest about our experience can actually help us find our way back to health.
“You should have chosen a different treatment method.”
Understand that this is our body and our health. We need to make the best possible choice for our own well-being and do what makes us the most comfortable. I guarantee you that we have weighed the pros and cons and considered things from all angles. We’ve likely been consumed by thoughts about what to do since we were diagnosed.
Just because someone you know chose a different treatment method for the same illness does not mean that is the right direction for everyone. Respect that we have discussed our options with our health care team and made the right choice for us – even if it is different.
Most of the time people are speaking from a genuinely loving place. It can be awkward to discuss health problems and most of us, spoonie or not, don’t really know what to say!
As a spoonie, it’s important that you learn to be patient and open about your needs. Understand that people might not always say the right things. If someone is trying to meet you halfway, acknowledge their effort and work together to create the Health-Esteem family that you need.
If you know someone who’s suffering from a chronic illness, make sure to be present, let them know that you are there for them and provide them with support and love. It’s ok if you’re at a loss for words! We don’t expect you to have a magic answer; we just want your compassion and support. Be a part of our Health-Esteem family and help us create the world that we need to heal and thrive.
Do you have anything to add to the list? Share your thoughts in the comments below!
Health and love,
Thought of the day: I am willing to be present and work together with the people I love to create the healing environment that I need.
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Hi baby – I think that was the most inspiration thing I have ever read. So many times, when people are very, very sick, they don’t look it, and everything above touches on something they have felt. Everyone should take the time to read and consider what you have written. You deeply understand so much. What an awesome human being you are!
Thanks mama! I’m glad that you liked it and felt inspired. Thanks for raising me to be an awesome human being – I learned from the best! I love you <3
100% accurate. Thanks for this post, it’s helpful for those who don’t understand. #4 and #5 especially. #4- I actually gained weight when I was diagnosed, and so have a bunch of other people in my Graves’ FB groups. Not everyone loses weight with it. #5-sister has Graves’ too, but she is doing a lot better with it than me. I have a lot more pain and struggles with it than she does. Though I have had longer, plus like you said, it affects everyone differently.
Hi Madison! I’m so glad that you enjoyed this. I think we’ve all been on the receiving end of some of these!
I had lost a lot of weight initially and then gained it back and some more right before I was diagnosed. The medication caused me to gain a lot as well over the first few months. I’ve heard both weight loss and weight gain are completely normal! However I have had people tell me that they wish they could have hyperthyroidism or graves in order to lose weight and it drives me insane! I honestly can’t even fathom the idea. Have you experienced anything like this?
It’s certainly always a unique experience. I hope that you feel much better in the near future! <3
I haven’t had anyone say they wish they had it, but I have had people say “Aren’t you supposed to lose weight with an over active thyroid?” in a judgy voice. But I just brush it off because they are just ignorant.
Absolutely! I adore your positive attitude! 🙂
The best is….its the wheater; rainy and gloomy…..oh Yeahhh that’s it. Duh