Addicted to apathy – my experience with pain mismanagement in the UK

For twenty years I was reliant on a veritable smorgasbord of pain relief – I never managed to control the pain, yet the ‘relief’ controlled me. 

Last year I proudly announced to my psychiatrist that I had beaten an opioid addiction single-handedly and was finding genuine relief with cannabis. Never in a million years had I expected her to withhold medications for complex post-traumatic stress disorder (C-PTSD) and force me into rehab. It made no sense whatsoever. 

In 2022 I’d been recovering from major abdominal surgery when I developed a postoperative ileus – in layman’s terms, my bowel went to sleep. I vomited litres of bile at a time and was unable to release gas, the pain was immense. For two decades I had been chasing a relief I could never reach – codeine, tramadol, nefopam, gabapentin and morphine were no match for my everyday pain, and this was beyond anything I’d ever felt. The only option now was to add in oxycodone. 

I had kept most of the ward awake writhing and screaming in pain through the week, but that night I was silent and still. I was so doped up that I could barely feel my hands and feet. My ears were ringing, flashing lights strobing in my eyes. Drool was running down my face, but I couldn’t lift my arm to wipe it away – the only other thing I could feel was the pain. As I lay there, slobbering, inept, and still in pain, I wondered if I’d ever be free. 

I stayed in hospital for another month and dutifully took every useless dose. They briefly warned me about addiction, and said I’d be monitored after discharge in the pain clinic. This was music to my ears as I’d never managed to bag a referral before – despite constant debilitating pain from Crohn’s disease, arthritis, fibromyalgia, and adenomyosis. To this day I haven’t been seen in the pain clinic.

Discharge was terrifying, I’d already been discharged four times that year, and each new admission was longer than the last. In total I racked up five out of eight months as an ‘inmate’. I was convinced I’d be back, or dead, within a week. Once home I took my meds religiously, I was careful to maintain my maladaptive comfort blanket. I had stayed with my ex-husband for a while – it was like a bubble where I could hide from the world and sink into indifference.

Eventually I had to do normal things like short drives. Not having driven for almost a year, I skipped my morning dose thinking I’d be safer sober. As I was driving my head started pounding and I suddenly felt like I was going to vomit on the steering wheel, everything around me felt too loud, too bright, and too much. Sweating and shivering, I looked over to my ex-husband and said, “I think I’m dying!” It might sound a little dramatic, but the fact is I’d only ever said that sentence once before, it was the night they rushed me into the resuscitation unit with sepsis – when you know you know!

I looked to him for reassurance or a plan, he looked back and said, “Helen, I think you’re in withdrawals.” Ironically, I was a danger because I wasn’t under the influence of drugs. We only completed half of the trip and had to get a taxi back. The thought of taking oxycodone made me heave, but then so did the thought of coping without it. I opted for a small dose, and for just a moment I convinced myself that it wouldn’t help, this wasn’t addiction it was another flare, perforation, blockage, or infection – anything but addiction. Every symptom eased, and I sat in shame.

When I woke in the morning my body filled with anxiety, I felt like people would judge me, my kids could be taken, my career could be killed. I could lose everything for relief. How could people watch the light inside me fade and die, drowned in opioids, but judge me for smoking weed?!

I’d enjoyed cannabis recreationally in my younger days, and I knew it would at the very least get me past the prescriptions quickly. Without a second thought, I picked up my first bag in years and had the best night for as long as I can remember. When I woke in the morning my body filled with anxiety, I felt like people would judge me, my kids could be taken, my career could be killed. I could lose everything for relief. How could people watch the light inside me fade and die, drowned in opioids, but judge me for smoking weed?! The double standard was evident, and it enraged me.

I was aware that there was some scope within the NHS, but it felt so far out of my reach that it was pointless even trying. Not once did it occur to me that private clinics existed, let alone that they were somewhat accessible. I just knew that I wanted to take a controlled approach, so I learned to make my own oil for edibles.

Over the next few months, I saw improvement beyond my wildest dreams. I’d suffered with anxiety, intrusive thoughts, and suicidal ideation for a long time, it’s something I never thought I would escape. Yet I found myself enjoying an increasing quiet peace, something I never thought possible.

I was sleeping more, and food no longer terrified me as I could finally eat without feeling like I was digesting hot glass – my hair got thicker and my skin brighter. Then there was cannabis’ capacity to make even the most mundane of tasks entertaining, where I once stood cooking for my family feeling dead inside, I was now dancing around the kitchen – I felt almost normal.

Arriving at the psychiatrist’s office in the spring of 2023, I felt hopeful, confident, and empowered. I truly believed that she would see the risks of opioids, and the benefits of cannabis. Instead, she gave me some spiel about contraindications and cumulative effects and told me that I would have to complete twelve weeks of outpatient rehab before they would consider reinstating mirtazapine – an antidepressant, and chlorpromazine – an antipsychotic. In a state of futile panic, I promised to quit that day – I believed that I needed those tablets more than anything and without them I felt hopeless.

It was a little over a month before my first appointment at the rehab clinic. I spent that time researching my options and began the application process with Curaleaf. I wasn’t going to beg this time – I was going to fight. When I walked into rehab, I looked around and knew I shouldn’t be there. I watched as desperate people arrived in total crisis, but I had averted my crisis – this was ridiculous. To my shock and amazement my rehab support worker was on board, she told me that I wasn’t hitting any of the markers for addiction and that it was clear I was genuine with my intentions. She fully supported and validated me in pursuing a prescription for cannabis. Afraid of being penalised by psychiatry, I continued attending sessions at the clinic, we kept them as infrequent as possible – the bare minimum to prove my willingness to engage. It wasn’t a totally pointless exercise – I used my appointments as a space to reflect on my long history with pain mismanagement. 

Rehab forced me to confront my first experience with opioids at age 15. I had said from the very first day that there was no relief from pain, and only a strange, woozy, emotional numbness. Doctors, nurses, and my parents relentlessly reminded me that if it was bad with the drugs, it would be worse without them, and if woozy calm was all I could get, I should take it. I wonder if they ever considered that that mentality would lead to twenty years of chasing apathy and accepting pain.

I discharged myself from rehab as soon as my cannabis prescription was approved. It’s now a year on and I have more control over my pain and life than ever before. My only real struggle is the cost.

I haven’t been invited back to the psychiatrist or been given access to mirtazapine and chlorpromazine. And that’s fine. Frankly, I’m better off with cannabis.