• Hannah Ost

The Spoonie Sagas #5: Coping with Loss

For a lot of Spoonies, life before chronic illness was a whirlwind - many were go-getter-types, with our eggs in twenty different baskets, with time and energy for everyone. For me, in particular, I said yes to everything. So, when I finally came to terms with having to step back from that, it hit me hard. I had lost my old life. That feeling of loss is a prominent one in the 'Spoonmunity'* but one that's not acknowledged enough in my opinion. There are millions of people missing from the world and they're missing the world too!

*I just invented that word. I know, it's the dumbest thing ever, but it's staying in because 1% of my brain thinks it's hysterical.

As always, this is my experience. If you have a story you'd like to share, let me know in the comments, or by contacting me by clicking on that lil' link!

So, here are a few things I have lost since this began:

My friends - With less time to socialise, a lot of my friends just started to slip away. Some of the people I used to hang out with stopped asking to go out, they stopped telling me about exciting things in their lives. I was on bed rest for so long and I started to feel very lonely. I still have a few truly amazing friends, some of whom came to visit me at home, but I lost quite a number as well. At least, when the going gets tough, you find the ones who'll stick around.

My career - I was, and still am, a hugely driven person. I started working at 16 and by the time I reached 20, I had a 3-page CV, full of skills, qualifications and experiences. But since being ill, I've had to say no to amazing opportunities, quit jobs because of how strenuous they were. It sometimes feels like I'm in limbo, just hanging here waiting it out until I get better.

My academic goals - I study drama, but I can't take practical modules (work that one out). Instead, I'm stuck in classrooms or catching up lectures from my bed, learning the theory and business side of theatre-making. Not at all what I signed up for... who knows, maybe it'll come in handy in the future?

Food and Drink - No caffeine, no added sugar, no alcohol, no gluten, no processed food, no soya... on top of the dairy intolerance I already have. It's annoying to have to think about everything I put in my body and frustrating to have no freedom to eat out wherever I want. I have to scour every allergen menu. When the waiter asks, "What's your allergy?" how can I turn around and say, "Oh, it's, erm... everything. Basically, everything"?

But, as much as I have lost, I have also gained a few things. I think it's important to not only focus on the negative side of things, else I might lose my head too!

I have gained:

The ability to say no - Simple, but I could never do this before. I never wanted to be confrontational, or a burden. I'd say yes to every little request, at the expense of my own health. But, as hard as it was to say no to the things I don't want, it was nothing compared to saying no to the things I do want. Even though I can't progress in the way I would like at the moment, I have learnt to call time when enough is enough and that brings me onto my next gain...

A deeper understanding of myself - My body, my limits, my rules. I know when my body is screaming at me to stop and I take practical steps to take care of myself now. Somehow, this didn't seem important before! I could always rely on my body to support me, I took it completely for granted and though my brain still wants to get up and go get it, I have a deeper knowledge of my body's limitations, so I can call time when it gets too much.

New Friends - I've lost a few, but I've gained a whole community of supportive Spoonies, who all know what it's like to deal with chronic illnesses every single day. I can turn to them for emotional support, health advice and guidance, as well as chats about getting better and our hopes and dreams. It's motivating and inspiring to hear other people's recovery stories, in the hopes that one day, that will be me.

So, that's how I'm coping with loss. A lot has changed since I became ill last year, but I choose to keep focussed on everything this illness has brought into my life and how much stronger I get every day I get through. How do you cope with loss? Let me know in the comments below, or by dropping me a line on any of my social medias linked above.


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©2020 Hannah Ost

Student Journalist