A Letter to Those Close to a Spoonie…

I’ve wanted to write this letter for so long, I’ve just never really known what to say. I was thrown into the Spoonie life so quickly that I never had the chance to say these things to the people around me, but I wish I had. So here it goes!

Ivy Photo
If you don’t know what a spoonie is, you can read about it here .  I also recommend you watch the video of Christine Miserandino explaining “The Spoon Theory.”  It honestly changed my life.

Now that you know what a spoonie is, I’m going to tell you what you need to know for when you’re close to one.  Whether it’s a spouse, a family member, or a friend; all of these things will still apply.

Know that it’s ok to ask questions! Honestly, I like when people ask me about what’s going on in my life in relation to my illnesses.  I’d much rather people ask me questions than just assume things behind my back.

Know that if you ask us questions, we’re going to tell you the truth!  Please don’t ask us how we’re doing if you don’t really want to know.

Know that our symptoms are real!  Even if we don’t look sick, our bodies are fighting against themselves.  Every day we struggle to survive, it just looks different for each of us.

Know that we can’t always do what you want.  You might get upset that we can’t do the things you want to do, but know we are still choosing to spend our time with you.  Spoonies don’t always have energy, but we do try to use that energy to spend time with the ones we love.  If we try to spend time with you, it means you’re important to us.

Know that it hurts us to know how much our illness affects you.  We don’t want you to have to miss school or work to take us to our appointments or procedures, but sometimes we don’t have a choice.

Know that we know how hard it must be for you to watch us go through this. 

We know that it can be hard listening to all of our symptoms and side effects, but we need to be able to talk to somebody about this.  Otherwise, we’ll just drive ourselves crazy and probably make our symptoms worse.

Know that we almost always still leave the really scary stuff out.  I know that some of the stuff we tell you might be scary, but we almost always don’t tell you everything.  Mostly because saying those things out loud makes them real for us, instead of just worse case scenarios.

Know that it’s really hard on us.  I know it’s hard on you, but don’t forget that we’re the one going through this.  We have to accept that our illnesses effect not only our body, but our lives too.  Some of us have to give up our dreams, our jobs, and more.

I could go on and on about all of the things that you should know, and I probably will another day, but for now I’ll let you go.

If you’re interested in more information, you might find two of my other posts helpful: 

25 Things Not to Say to Spoonies and 25 Helpful Things to Say to Spoonies

I hope this has helped better your understanding of the spoonie in your life or the chronic illness community as a whole!

Thank you for your time,
Ivy

Today’s guest poster is Ivy, a wife, creator, photographer, and a spoonie who blogs at  Perfectly Ambitious.  She writes about many topics from DIY to fashion, and has amazing resources for spoonies! 

Ivy Photo Her

Are you living with a chronic illness? Have you been wanting to tell others about your experience? I would love to help you share your story! Contact me at vicky@livingthediagnosis.com!

4 thoughts on “A Letter to Those Close to a Spoonie…

  1. Very interesting, the spoon theory. I don’t have a chronic illness but I do have 3 kids, and it took me until I was pregnant with my third that I realized that I only had so many “spoons” to use throughout the day. Before this realization, I would plan on getting a whole bunch of things done and then beat myself up when it took me literally ALL day to do ONE. Looking back, I think I was pretty depressed over not being able to function like I used to before kids. I just didn’t know what was wrong with me! But since realizing that my energy would last only so long and for only so much and then planning my days accordingly, I have been much happier and, ironically, much more productive. So I understand to an extent what you’re going through. Just a little bit! What a great analogy! Thank you for sharing.

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