Opioids and Benefits

The uncomfortable parts of a life I didn't choose.

At the time of writing this, it is just over 3 years since I last went to work.

I was a Mother’s Help working for a private family. Everything Covid-related was just kicking off properly at that time (March 2020), and I’d been told to stay at home after the household I worked for were symptomatic. I didn’t realise that I wouldn’t be going back there again and a few weeks later I was made redundant. It took a few more months before I was able to face the realisation that my health wasn’t predictable enough to be able to apply for anything else.

Let me tell you now that, even 3 years on, it’s still difficult to talk about being unemployed and on disability benefits. I’m 34, and this isn’t how I imagined my life being, but there is also still a lot of stigma attached to people who cannot work, and lots of false narrative around benefits and the kinds of people that are receiving them. Applying for benefits is not an easy process to go through, and to this day I cannot fathom how anyone could manage to lie their way through the assessments in order to receive something they’re not entitled to. It is demeaning, and at times cruel, especially considering that the people applying are often desperate for help.

When you’re in the midst of the tumultuous raging sea trying to come to terms with a life-long, life-changing illness, the last thing you really feel like doing is having to prove your eligibility and disability to a stranger who seemingly doesn’t want to believe you.

The benefits process was damaging to my mental health and the stress of it pushed my body into a flare. So many of our conditions move with the levels of stress we are under, yet so much of the support we are entitled to seems to come with arduous assessments and questioning that borders on interrogation. I wonder if there are kinder ways, involving health care professionals that people are already involved with, but then I remember that disabled people are still very much on the edges of our society.

It’s also 2 years since I started taking tramadol. 2 years since I realised that I could no longer cope with the pain I was in without help. I’d previously taken tramadol after an operation: I remember the doctor on the phone saying “Of course you can have some strong painkillers! You must be in so much pain after that”. It was so easy and simple at that point. You don’t get that kind of response when your pain becomes chronic, and the ‘opioid crisis’ in America, along with NICE guidelines, has tainted the way patients are treated here in the UK when it comes to stronger pain medication. They don’t like prescribing it. They don’t like us taking it. But the reality of a life without pain relief just doesn’t bare thinking about. There are other types of pain management that help alongside, and I realise that I am responsible for doing some of the work myself (and not just relying on a tablet). I understand the dangers of taking a strong painkiller for a long period of time, and constantly review this with myself and my GP. I’m also painfully aware that pain relief options are finite, and I’m only 34. I don’t want to burn all my bridges before I’m 40 - that would be really silly.

It feels like a bit of a weird thing to say, but I do wish doctors had been more honest about the reality of chronic pain. Pain relief just relieves pain - it doesn’t take it away completely. Long gone are the days of popping a paracetamol and my pain magically disappears. Pain is always there in some capacity. Oh, and there are so many different types of pain as well. No-one ever teaches us how to tell them apart, or how to explain them to someone who asks. Maybe this speaks of my neuro-diversity [which will be saved for a future post, when things are making more sense in my head], but I suspect that most people struggle with the reality of pain all day every day. The truth is that our society doesn’t have much room for pain and discomfort, and we certainly don’t encourage it as a necessary part of our existence. We also promote and celebrate people who soldier on through pain and discomfort, as though ignoring their body is something to be proud of. I’ll never forget a conversation I had with my last boss about my absences from work (which I’d eventually discover were due to symptoms of a very real condition). She told me she’d never had a day off ill in her whole working life - even when she’d broken her leg and it was in a cast, she still went in. I wish I’d been more confident to point out the ridiculousness of this to her, but I did manage to communicate that people were different. It totally played into the unconscious messages I’d received about being ill, and of that equalling weakness. I truly saw myself as weak and unable to deal with life. I didn’t want to have to take time off work, but I also knew that I had to. My body was becoming louder and louder with its symptoms, and I had to take notice.

I’m grateful that I was forced to take notice of my health, because otherwise I think I’d have tried to carry on, and ended up causing myself some real damage. I’m grateful that I was made redundant, and grateful that Covid caused the world to stop. These things gave me the opportunity to really see what state I was in, and meant that I could take the time I needed to come to terms with everything without any distractions.

The truth is that I still feel bad about not being a ‘valuable’ member of society. I constantly struggle with the thought that I am not as good as other people because I can’t exist in their world. I worry about being asked what I do for a living, or what am I doing for work now. It’s always one of the first questions from people, and one of the most painful. It’s a constant reminder that I’m no longer able to even pretend that I’m normal. I’ve begun to explore what defines us as individuals, and what parts of ourselves actually matter (it’s certainly not our 9-5!), and what can give a life meaning and purpose.

It continues to be a path I stumble down very ungracefully, but that’s okay. I’m moving, and growing, and becoming; even in my brokenness.