If you love someone who lives with chronic pain, you must read this

"Heal Me" book cover

"Heal Me" book coverHeal me: In search of a cure is a lively, engaging, darkly humorous, and very readable travelogue. Except, that’s far from all it is. This is an important book about chronic pain and I want you to read it.

Julia Buckley reached for a cup of coffee. In that moment her world ended…

…and a whole new world opened up.

Julia writes of her global quest to find a cure for her chronic pain after conventional medicine had failed her.

Doctors, faith healers, celestial beings, and traditional and alternative medicine practitioners all make an appearance. She has participated in vodou ceremonies in Haiti, taken all manner of pills and potions, and bathed in chicken guts and her own vomit in Soweto.

This magical mystery tour takes in the brave new world of Colorado’s cannabis revolution, the Lourdes grotto with its miracles, and includes time to commune with the alternative types at Joshua Tree.

Why read Heal Me?

The journey took years and many thousands of miles. I won’t spoil the book by telling you whether or not Julia finds “it”, the cure. But I will tell you that this is the most honest account of life on the chronic pain rollercoaster that I’ve ever read.

Don’t read this book for the latest alternative therapy you’ve never tried. Read this to know what it truly takes to come to terms with chronic pain and to seek recovery.

Read on...

Less ‘supercrip’, more Lilith with a walking stick

Julia’s openness is extraordinary. She’s up for trying pretty much anything. Even when she’s shit-scared of it, or doubts that she’s capable, or is fairly convinced it will kill her. And she looks into her own mind, opinions, and entrenched beliefs for what is stopping her recovery. I think that’s actually where the gold lies.

The patriarchy and shitty bedside manner are two major villains of this story. Julia is unafraid to take them on and rage about the injustices. She is, at times, like Lilith with a walking stick. But this is not the story of a ‘supercrip‘. There’s no whiff of bravery or triumph over adversity, which would have made me want to puke.

Even people with disabilities enjoy privilege sometimes

We also have to acknowledge privilege. As a white middle-class woman with an elite education and the means to travel, Julia enjoys privilege. She acknowledges this with honesty and vulnerability and at the same time makes it plain to see how badly she has been treated. Like most people living with chronic pain, she has worked far harder than she should have had to just to be well enough to live the life she wants.

Julia has had to find her way through some devastating knock-backs, crushed self-esteem, and the double-edged sword that is hope. And we, as readers, have the privilege of peeking into her life to see that, despite all of this, she just wants to be well.

A couple of confessions

I live with chronic pain, too. Like Julia, I have also been undiagnosed, misdiagnosed, fobbed off, told I’m lazy and fat, instructed to exercise, encouraged to pace myself, and assumed to be malingering.

As a woman with chronic pain, I am less likely than a man to be given pain medication, more likely to be labelled hysterical, and almost certainly on the road to a psychiatric diagnosis. That’s been my experience, and Julia’s too.

The book is an insight into how the patriarchy has abandoned us, made it impossible for doctors to care or empathise, and left us vulnerable to any quack or snake oil salesman out there.

I must also tell you that I know Julia. We were at the same university in the early 2000s, when neither of us had a diagnosis.

We have to share our experiences

One chilly Easter vacation, Julia and I were still “up in Oxford” and Julia was really poorly. When I rode my motorbike across town to pick her prescription up, I didn’t know that her exhaustion and pain were part of a genetic condition (neither did she).

And I realise now that I hadn’t explained to Julia why I rode a motorbike in a town full of pedestrians and cyclists. The truth was that my knees were ruined and I was tired all the time too.

By the time we got to Oxford, we were already riding the chronic pain rollercoaster. I wish we had spoken about it, but we didn’t.

The time I spend with others who live with chronic pain really helps me cope. There are certain things you don’t have to explain. I’m not tempted to justify myself or fight to be believed, and, somewhat ironically, it’s actually easier to talk about something other than my conditions.

I regret hiding my pain for so long and I’m sorry I didn’t learn of Julia’s until recently.

Would I go to these lengths to treat my pain?

Most of Julia’s adventures are beyond this home bird, but there is one thing I have tried…

I have family in Colorado, where cannabis is legal for medical and recreational use. Cannabis and cannabis products are a game changer for me.

Last year we took a trip into the mountains. It was about a five-hour journey from Boulder, ending in the beautiful off-the-beaten-track resort of Crested Butte where we would stay for a glorious week.

Unfortunately, my amitriptyline (an anti-depressant that is also used to treat nerve pain) was still in Boulder. But in Colorado I could buy and consume cannabis that was high in CBD (the pain killing part) and low in THC (the making-you-high part).

The result: my pain was managed about as well as usual. The big win, though, was that my head was clearer and I could remember things more easily.

Cannabis laws need reforming in the UK

I find it criminal that I can’t be prescribed this effective, safe, non-addictive product in the UK.  Yet my doctor will happily dish out highly addictive opiates so I can get comfortable enough to sleep at night.

The good news is that it is still legal to make and sell CBD oil extracted from industrial hemp, in the UK. I vape CBD oil when I need a bit of extra pain relief. It works for me and doesn’t make me high at all. Unfortunately, it is also expensive. Many people who live with chronic pain and are unable to work, cannot afford it.

Will this book change how I manage my conditions?

Honestly, reading Heal Me won’t change my behaviour or choices, but it has already changed my thinking. I am beginning to believe that clawing back my self-esteem is the first step to recovery. And Julia has reminded me that I’m strong enough, stubborn enough, ambitious enough, and sufficiently loving and generous to do it.

Get Involved!

– Read the book – find your local bookshop here.

Featured image via Orion Publishing Limited.

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