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!
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.
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!
Labels: Letters, Spoonies
