Share a story – Lizzy

Hope.

Hope is a strange and glorious thing, and it can do much good. But it can be painful too.

Sometimes we are unrealistically hopeful. Sometimes we hope for the wrong things.

I have experienced this many times throughout my illness.

 

When I was 14 I got a severe gastric flu virus, and was incredibly poorly for a month. I was exhausted afterwards, and went on a slow phased return to school.

I got a bit better over a few summer months, and thought that would be the end of it, but when I went back full time in autumn, I crashed, hard.

I never made it back to school again, and that was the start of hope being painful. Every term I would long to go back, every term I would hope that by the next term I’d be well enough, and it never happened.

It felt crushing every time.

 

I was diagnosed with M.E, and told by medics and others around me, that most young people get better in 2-3years.

I hoped that would be me. I was adamant that it would be me.

But the time passed and despite all my efforts, I was still sick.

Then I was told 5yrs. And I hoped.

And five years came, then six, seven. I still had hope that I would recover.

 

I would think things like “when I’m better, I can’t wait to walk up Pen Y Fan again, or go on an overnight hike with my mum, or camping with friends for a week.”

Better to me then, meant recovered, fully recovered, back to how I was, strong and healthy.

I thought it would happen. I willed it to happen, but it didn’t.

Some days I would be so utterly despairing that I didn’t know how to continue.

 

But over the years, my hope has changed. It’s shifted.

As my health issues became more complicated, and allowed me less freedoms, I had to find peace, in order to survive.

Hoping I would fully recover was, I realised, for me a fairly unrealistic ideal.

 

Some people would think this is me being negative. It isn’t.

This is being realistic about what I have, and what I may have.

Hope looks different now. It’s on a smaller scale.

I hope that I will have a more comfortable day.

I hope that I will manage to sit in the shower soon.

I hope that I can laugh with my family, my loved ones.

I hope my seedlings, that I planted whilst in bed, grow and bloom, and that I get to see them.

 

I have adjusted hope to fit my life, instead of aspiring for something I have no control over.

 

In the context of M.E, sometimes I feel hope can be used as an expectation by the outside world, that if you hope hard enough, you will get better, you will recover. And whilst hope of course plays a part in holding on, it isn’t possible to simply ‘will’ yourself better from a complex long term disease.

 

It isn’t negative to acknowledge that.

 

I no longer use hope as a fantasy tool, to ponder on where or what I’d be doing if I were no longer sick.

Hope is a tool that helps me, I hope that I will have “good days” with less exhaustion, and less pain. I hope that I will be “better than now.”

 

And sometimes I think society doesn’t like this kind of hope.

Society wants us to think we will be completely healthy and able again one day, even though we have a chronic illness. (Meaning long term).

And if we don’t live by this version of hope, it’s thought we have given up. We have not.

 

This version of hope is unrealistic, but perhaps more comfortable for society to sit with.

 

But I will not sit with it anymore. For me now, hope it focussed on short term, in the moment, and that is where I find peace with my ill health.

 

Lizzy Horn 28/03/22

Twitter @hopefullizzy & Instagram @lizzyh_rn