What does hope mean to you?

“Hope” is the thing with feathers –

That perches in the soul –

And sings the tune without the words –

And never stops – at all –

And sweetest – in the Gale – is heard –

And sore must be the storm –

That could abash the little Bird

That kept so many warm –

I’ve heard it in the chillest land –

And on the strangest Sea –

Yet – never – in Extremity,

It asked a crumb – of me.

BY EMILY DICKINSON
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Grieving the Self

Hello fellow zebras and spoonies. It’s time for another talk about grief. Yup, I talk about this topic a lot. Why is that? Well, because grief is a fundamental part of the human condition and it is something that we aren’t very good at dealing with. I believe that by having better conversations about our suffering and grief, we can become better at coping and gain resilience.

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REJECTION SENSITIVE DYSPHORIA

There is a truth that comes with having chronic illness that isn’t often talked about: we get rejected. This rejection comes in many ways. We are told that we are not good enough, not trying hard enough or we are compared to other people. We hear phrases like “Why can’t you be like your sister?” We loose friends because they don’t understand our daily struggles and we don’t always know how to talk about them. 

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Coping with Chronic Illness

I have recently been more open about my diagnosis of EDS and have been talking about it with more people. Not that I was ever trying to hide it, but I personally have been more educated on it and am learning more all the time. This makes it much easier to have those conversations. One question that I have been getting frequently is some variation on “How do you cope with the losses that your chronic illness brings?” I find this to be a surprising and strange question. I’ve also struggled to answer it. But here goes!

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