Table 3 Quotations illustrating themes and super-ordinate themes

Without opioids, the pain becomes the boss

The pain separates the self from the lived life

You would have to say, um, but for me it was, the choice for me was to be disabled, an invalid, or to have a life [with opioids]. [−--] I was in so much pain. Because when I didn’t have the proper pain treatment, then, my body didn’t work, I couldn’t function. I couldn’t sleep, I couldn’t walk; I couldn’t do anything [voice fading]. IPA09

I played with the notion several times: ‘why should I live when I have this much pain, what’s the point’, kind of, ‘no one believes that I have this much pain and I get no help’ …IPA05

The loss of self or the questioned self

It’s only now really, now that I have tapered the methadone that I, that I realise how much it had affected me mentally [−--] And it is very difficult to admit to yourself that you are affected by it. So, or for me anyway, it is. Em, yeah, I think it’s hard. I haven’t wanted to admit that I am cognitively affected by the opioids. [−--] Yes, but, for example, my sense of humour disappeared. Because you have to think quickly to be witty. IPA10

Or my belief in people’s attitude, I guess you would say, there is no one around who, I have never experienced that someone has said anything, but it has probably happened. Yes, sometimes knowledge is a burden, you might say, kind of … That you, you know what you are doing and you think, ‘Yes, but I wonder what they believe and what they think and so on.’ IPA09

Experience of control and loss of control

What is really taxing, personally, I think is the chronic pain as well. That you can’t sleep at night, and so that it is more difficult and the opioids work very well on me. IPA09

That I have a little control too, I take some joy in that I actually manage at this dose… IPA07

And since I have these old problems with addiction, I don’t dare take a chance either, so I voluntarily come here [to the addiction clinic] 2 times a week and get them. IPA01

Opioids as a salvation and a curse

A difference between physical dependence and opioid use disorder

[Oh] I went to the emergency room […] I think I was there three or four times in a week. I just lay there and kind of screamed because I was in so much pain, but then they read in my medical records that I was an addict, so then they didn’t want to prescribe me any painkillers. IPA05

A nurse who doesn’t know my story. Just because I need some extra pain relief, I am treated as if I am some addict, and that’s what I feel bad about, actually. IPA06

I don’t have withdrawal or that I am addicted or anything like that. I take them because I have pain, that’s how it is, but it’s nothing I feel a craving for. It’s not really something that I crave, it’s not like happy pills, the OxyContin [−--]. Then you’d be an addict. IPA06

[I] started, I know, with about six [methadone] pills, two pills three times a day. I have actually been able to reduce that dose, so it was like not being able to, yes but kind of lying in bed and screaming because of the pain and not being able to do anything, to have a life again, it made such a difference. IPA05

Um. So, it’s no problem to take it [the opioids] as well. [−--] So I would certainly not, so I, I would certainly feel better if I did [increase the opioid dose] but I don’t want to. [−--] I’m not going to have a higher dose than this, as well. Nah. [−--] You are afraid to get stuck as well as lose control; I know that it is very easy to do that. IPA08

Opioids as a menace

I think it has to do with this kind of medication, definitively. I wouldn’t tell anybody that I’m om methadone. IPA07

…I remember that it was discussed a lot – what you… the risks of getting dependent and other risks, ehm, at first it felt more like a problem than a solution to what I was to deal with. IPA04

Acknowledgement of the pain and acceptance of opioid therapy enables transition to a novel self

The experience of disbelief and violation – being stigmatised for using opioids

A nurse who doesn’t know my story. Just because I require some extra pain relief, I am treated as if I am some addict, and that’s what I feel bad about, actually. IPA06

There is nothing for them to do, so very often I believe that they thought I was looking for, um ... [opioid injections] [Sigh]. It feels humiliating and [thoughtfully] ... Yes, but shameful, like, in some way. Nothing that I said or did could make them understand that it wasn’t like that. That feeling of, that people think I am just lying there and [deep sigh] yes, but this whole feeling of powerlessness just came over me. IPA10

Someone who acknowledges the pain and whom you can trust

Oh, I’m afraid I’m not going to get the same doctor, like, that’s my experience if you’re looking for medical care in general today; you certainly can’t expect to meet the same doctor [...] That it could all be done within primary care, just forget about it. IPA08

The doctor, he believed in me and he told me: ‘It is like this: I will give you this medicine, Oxynorm, but this is what you will get, you will get no extras’, and then he saw that I could manage it…IPA05

Acceptance of the pain and opioid therapy as a part of the self

It can still be hard for me to accept the chronic pain, but it doesn’t take so much energy anymore. I sort of realize that ‘ok, now I’m there again, let’s move on’ IPA04

It is such a scary disease. I mean it is chronic, I still have it […] It is nothing you get cured from, so it is scary, you never know when the pain will come back, and when it does, then, then… but right now it just feels like I could [−--] Yeah, I hope I will manage without opioids, that would be so cool. IPA10