April 12, 2024

My daughter is a Spoonie, well according to Instagram she is. This led me to wonder what the heck is the #Spoonie hashtag and what exactly is a Spoonie?

As you know my daughter just went through a Kidney transplant back in August 2015 where I gave her a kidney and she bounced back from surgery really fast. Well initially she bounced back really fast but then she kind of receded back to being tired a lot and missing school and stuff.

Kidney disease sucks – we know she will get better but it is a longer road than we thought it would be.

How the Spoon Theory Started

i am a spoonieAs for the Spoonie hashtag. The idea of this was created by Christine Miserandino. While out at night with a friend she was trying to find a way to describe what it is like to live with a chronic illness.

And the Spoon Theory was born that night.

The idea is that if we look at regular tasks in our day, getting up, getting dressed, making breakfast, talking to people in the street, each of these simple tasks can be reduced to an action.

Symbolized by a spoon

(I don’t do this description justice at all you really need to read the article to hear her fantastic story.)

Anyway, these tasks for a healthy person would be unlimited. We have a nearly unlimited amount of spoons. Where someone like Christine or Taylor in our case, may have 12 spoons.

So as we cruise through our day trying to get my 10,000 steps in, or going to work and then having plans after work, people with chronic illnesses will be stuck deciding what are the most important few things, spoons, that they will do that day.

Here is Christine reading the Spoon Theory Story at a conference a few years back

I know with Taylor she can only do so much in a day and then she is done. Some people with Chronic illnesses can get more done in a day but that will leave them sick in bed for a day or more afterwards.

So this Spoon theory is a great way for us to look at people with Chronic illnesses. They look fine, but follow them around for a few days and you can see the deliberateness in actions. Only doing what is most important and passing on anything that is not.

Over the last few years many many people with chronic illnesses have identified with the #Spoonie hashtag and have used it on Instagram and Twitter and by using this special hashtag people like my daughter can find and support others struggling through the day the same as them.

How Can We Help Spoonies

I have been kind of bad as a dad of a sick kid, especially early on with my daughters illness.

Taylor would be tired and I would come up with little things that we could do. “Lets go to the store” Lets go for a bit of a walk”

I of course was just trying to help. I know for myself that the harder that I push myself the stronger I will be tomorrow. Probably not so true for Taylor and it was very tough for my expectations for her as well as her expectations for herself.

My wife Michelle has always let Taylor set the lead and the expectations. Taylor is very driven. If she is behind in school work she will work really hard, past her limits, to catch up. Michelle will always advocate for her at school and the hospital and make sure that Taylor does not have to push far past her limits and make herself sick.

Christine MiserandinoThe best way for us to support and help those with illnesses around us is to let them set the limits.

Make sure that we are helping in any way but not setting up high expectations.

Most of all let that friend or son or daughter to take the lead and set the speed that life is moving at.

Christine Miserandino has been a fantastic spokesperson for those with Chronic illnesses and give great ideas on her blog for how we can help those Spoonies around us.


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