Living with chronic pain: Grieving the body I wish I had

Grief is not just for the dead. Grief is for anything you have lost, anything you never had, and anything you are slowly realising you may never get. It is not linear, it is not logical and it does not wait for a convenient moment to show up. It just arrives. And sometimes it arrives in the middle of a week where you can barely move and a painkiller that was supposed to be strong does absolutely nothing.

This past week I have been in so much pain. Physically and mentally exhausting doesn't even cover it. I've felt completely debilitated. Moving has been a lot, sleep has barely happened. They gave me dihydrocodeine. Strong painkiller apparently. What pain did it kill though? Barely anything. Supposed to be a strong one too. Absolutely rubbish.

But in the middle of all of that: for the first time in 28 years I've realised I am grieving a body I wish I had.

A healthy body. Not one that has a few days or maybe two good weeks before the crash comes and the pain is back. A body that doesn't leave me feeling alone in it. Because as much as people are around me, I'm the one actually living inside this rusty thing. A body that doesn't make me second guess every single pain. Is this one of my conditions? Is it serious? Can I just leave this one alone? A body that doesn't require me to read every label before I can enjoy something, just to check it won't set something off. Even cold medicine bro!] I can't just grab it off the shelf like that when I'm sick. I'm not even allowed half of them.

A body that doesn't rely on me remembering to take daily medication just for my heart to function properly. A body that doesn't make me feel ashamed in certain clothes because my shape doesn't match what "normal" is supposed to look like... having to size up just to cover what I call my hump, which is a key feature of scoliosis. Even having a baby isn't a simple decision for me. I can't just wake up one day and decide. I have to consult doctors, be monitored, wait to be told whether my body can even do it. Even having people question what I can and can't do?

Nothing is ever just straightforward.

Honestly, life is funny. If you don't laugh you will genuinely go mad.

Then there's the performance. Getting up and going to work and performing okay qso I don't get penalised, so my manager isn't irritated, so my colleagues aren't sitting there thinking "not again"; so I'm not adding to anyone's caseload or making somebody else's day harder because of my body.

And that performance doesn't stay at work either. It follows me into friendships, into family, when really all I want is to be left alone in my own space. Maybe that's the autism talking because I genuinely love my people but when I'm physically running on empty I have to protect whatever scraps of energy I have left. I am preserving every. Last. Drop.

And then there is the invisibility of it all. On the surface I seem completely fine. And I am genuinely an upbeat babe. I talk a lot, I laugh loud, and when I'm out I am OUT for a good time. Which creates its own pressure. Because I feel this expectation to always be that girl. And on the days when I am not okay, it feels like a betrayal of who everyone thinks I am.

I have been surviving since I was a child. These feelings are not new. I have been carrying them for a long time. Missing school fun days because of appointments or operations. My grades being affected. I remember my year group was the first to sit all GCSEs at the end of Year 11, and I had an operation between Year 10 and Year 11. Spent the entire summer in hospital and recovery. No time to study. And still got moved down a set. Teachers said it wasn't fair. I knew it wasn't fair. But that was just life, and I just kept going.

The guilt comes in layers too. I can still move. I still have independence, mobility, the ability to express myself and get out into the world. These are things a lot of people genuinely don't have. I know that. I hold that. But it does not make my pain any less real. And honestly? When someone responds to what I'm going through with "it could be worse" it feels like a door being shut in my face. Why ask me what's wrong if we're just going to minimise it the moment I answer?

And then there is the spiritual wrestle. There's the Christian, wellness focused, mentally healthy babe and then there's the version underneath who is genuinely struggling to accept that this is just what life is now. As a child I thought it was hard. As an adult, where you're supposed to have more freedom, the body just feels more and more restrictive. When the diagnoses keep piling up I start wondering if I'm the problem. Is it something I'm doing? Why did all of this happen to me specifically?

It is sitting with God and screaming why but then saying God I know you are still good. Thennnn going straight back to I genuinely do not know how much more I can take because my capacity is in the ground right now.

I wish I had some words of inspiration to wrap this up neatly. I really do. But I've only just arrived at this place of honesty and I think that has to be okay for now.

Sometimes you have to sit with the reality of something before you can even begin to think about moving forward. What moving forward looks like at work. What support is actually out there and available. What day to day genuinely looks like when pain management is part of the picture. Working through the health anxiety. And if I'm being fully honest your sis is struggling with death anxiety too. The thoughts about what the end looks like and when. Whether I'm even going to get a future and what that future holds if I do.

It is all exhausting. And for now, that is enough of a sentence on its own.