Why I sometimes like my chronic pain

It’s often said that pain is hard to describe, but I disagree. I’ve been living with chronic pain for the last few years and describing it is easy: there’s always red-hot barbed wire threading through my body; my leg feels like a plastic bag full of custard and razor blades; my foot feels like TV static.

Pain detracts from every moment in my life, but I don’t hate it. In fact, I think I like it. This is because the constant physical vigilance it causes has had an unexpected psychological side effect — distraction.

My pain was caused by a slipped disc which then developed into sciatica, causing pain that radiated down my left leg. Despite taking opiates, regular walks, and a drug called amitriptyline, the pain got worse.

I spent months crying on the floor of waiting rooms with a zebra print hot water bottle stuffed down my leggings before I decided to pay for private healthcare to fast-track my treatment. I then had an MRI, which showed that a herniated disc in my spine was pressing onto a nerve root. I was told there was a risk of paralysis and sent for surgery, to remove disc fragments and parts of vertebral bone that were pressing on my spinal nerve.

Obviously, I’d rather not be in constant pain, but I now wonder if I’m happy in other areas of my life because of it

Despite the surgery, chronic pain is still a part of my life and it’s affected me in ways I couldn’t have expected.

For most of my life, I’ve had a constant stream of negative thoughts flowing through my mind; a chorus of doom-predicting prophets outlining the worst possible outcome for every situation.

As a result, I’ve often found myself lying awake at night, haunted by the weird way I said “hello” to a receptionist in 2006. These thoughts have translated into real-life consequences: I once backed out of a job interview because I discovered that the hiring manager followed someone I went to school with on Instagram. Somehow, I thought: “What if they’re friends? What if they told them that I’m annoying, and weird, and bad at maths?”

It wasn’t until I was well into my twenties that I went to therapy. This was useful but not life-changing — cognitive behavioural therapy (CBT) and guided meditation gave me tools to help manage my negative thought patterns, which made coping easier but didn’t completely stop the thoughts from happening.

One night, years into my long-term relationship with pain, I was in bed rubbing ibuprofen gel onto my bum and I realised that I wasn’t thinking about the receptionist. Or the job interview. Or how many people currently hated me and why. I was thinking about how my sciatic nerve felt like a patch of nettles running through my body. I was thinking about how to position my leg to reduce the pain and how to care for my aching body.

Obviously, I’d rather not be in constant pain, but I now wonder if I’m happy in other areas of my life because of it. Yes, it’s difficult, but my pain puts distance between myself and my thoughts.

It’s a double-edged sword. I’m less wrapped up in anxious thought patterns, but nerve pain medication makes me tired and confused

You could say that my pain grounds me in my body, almost like an unintended state of constant mindfulness. But it’s a double-edged sword. I’m less wrapped up in anxious thought patterns, but nerve pain medication makes me tired and confused (which makes work difficult). I’m more appreciative of the abilities I do have, but I struggle to put my shoes on without help. I understand my body and how to care for it, but this costs £300 a year in ibuprofen gel and ice packs.

The biggest difference my pain has made is that it makes things which once seemed daunting, now seem trivial. I would never have become a writer without my pain — I’d thought that editors would laugh at my pitches. Now I don’t have the space for these worries because I’m constantly aware that my body is deteriorating, and that life is short.

I’m still waiting for an MRI to determine whether my pain is caused by more disc herniation, scar tissue binding to my nerves (epidural fibrosis), or nerve damage. These post-operative complications are often grouped under the term “failed back surgery syndrome” (FBSS).

FBSS isn’t a definitive diagnosis. Prognosis can also be also unclear: another herniation or excessive scar tissue could be removed, and damaged nerves might heal over several years. But there is also the possibility that damaged nerves may never heal, or that scar tissue might be too difficult to remove.

This limbo can be as difficult as the pain itself. I exist in an uncertain state, facing either a lifetime of pain and disability or a return to “normality”. I can’t make plans to visit friends because I might be in too much pain to walk next week. I can’t apply for full time jobs because I have no idea if I’ll be able to sit at a desk or coherently answer an email at 9am.

But while I can’t plan for my future, I can’t worry about it either, and my pain stops me from dwelling on it. I just take each day as it comes, living my life one ice pack at a time.
 
 
Featured image is an illustration of a person curled up on a sofa, as if they are in pain. They are drawn in a black outline against a pink-purple background
 
 
Page last updated April 2021