Background
Methods
Philosophical and theoretical foundations of interpretative phenomenological analysis
Participants and settings
Procedures
Data collection and analysis
Methodological rigor
Results
mean (range) or n (%) | |
---|---|
Age, years | 43 (34–56) |
Women | 6 (60) |
Married/partner | 7 (70) |
Education level | |
Elementary school or less | 1 (10) |
High school | 5 (50) |
University | 4 (40) |
Employment status | |
Full time | 5 (50) |
Part time | 1 (10) |
Part time with sickness benefits | 3 (30) |
Unemployed | 1 (10) |
Pain conditionsa | |
Endometriosis | 1 (10) |
Fibromyalgia | 1 (10) |
Postherpetic neuralgia | 1 (10) |
Arthritis | 2 (20) |
Inflammatory bowel disease | 1 (10) |
Headache | 1 (10) |
Chronic osteomyelitis | 1 (10) |
Lumbago | 5 (50) |
Other unspecified pain | 1 (10) |
More than one pain diagnoses | 4 (40) |
Duration of pain, years | 17 (6–35) |
> 10 years | 6 (60) |
Opioid dose Morphine Milligram Equivalent (MME)b | 335 (20–960) |
> 100 MME/day | 8 (80) |
Duration of opioid therapy, years 12 (2–31) | |
> 10 years | 4 (40) |
Super-ordinate themes and themes | IPA01 | IPA02 | IPA03 | IPA04 | IPA05 | IPA06 | IPA07 | IPA08 | IPA09 | IPA10 |
---|---|---|---|---|---|---|---|---|---|---|
Without opioids, the pain becomes the boss | X | X | X | X | X | X | X | X | X | X |
The pain separates the self from the lived life | X | X | X | X | X | X | X | X | X | X |
The loss of self or the questioned self | X | X | X | X | X | X | X | X | ||
Experience of control and loss of control | X | X | X | X | X | X | X | X | X | X |
Opioids as a salvation and a curse | X | X | X | X | X | X | X | X | X | X |
A difference between physical dependence and opioid use disorder | X | X | X | X | X | X | X | X | X | |
Opioids as a menace | X | X | X | X | X | X | X | X | X | X |
Acknowledgement of the pain and acceptance of opioid therapy enables transition to a novel self | X | X | X | X | X | X | X | X | X | X |
The experience of disbelief and violation – being stigmatised for using opioids | X | X | X | X | X | X | X | X | X | |
Someone who acknowledges the pain and whom you can trust | X | X | X | X | X | X | X | X | X | X |
Acceptance of the pain and opioid therapy as a part of the self | X | X | X | X | X | X | X | X | X |
Without opioids, the pain becomes the boss
Um, and now it feels like, I'll stop taking it [the opioid] now, sure I can quit. That is, I can quit today if that’s how it is, but I know how awful it will be. [---] No, but, one: [with opioids] I’ll be able to live with myself. Two: I’ll be able to live with and have two little children around, who are very demanding, and not lose my patience with them, and I’ll try to also have a life together with my partner or my entire family. Without the pain relief, the pain takes [over]. Absolutely, it is the boss of my life. That’s how it is. IPA08
The pain separates the self from the lived life
Do you know what Teletubbies are, like, the children's series? Before, it was like the pain and the drugs were like this Teletubby suit, and I was somewhere inside trapped behind a zipper [...] it took over everything and there was no human being left. Then, I think that with the help of pain treatment, it is like having the zipper pulled down and stepping out and leaving that suit, which has made me become human. IPA04
[...] the days when I was able to take medications, it was so nice to get some respite in everyday life in some way, um, from these four white walls; I got out and could do things. [---] So, yes. I could start work again [after taking some opioids], at the same job that I had before, and it was like winning the lottery, I think. After these four years in captivity at home. [---] [laughing] emptying the dishwasher, that was like climbing Mount Everest for me [without opioids]. IPA02
The loss of self or the questioned self
Now I am a person with pain; earlier, it was really just a pain problem wandering around [before the opioids] [---] there was SUCH a difference in, like, but this is me again [shaky voice]. IPA04
You don’t know what it’s like to be normal anymore, I can sometimes feel like this, but, um, since I’m on such strong medicine. [---] It’s natural to wonder what it would be like without the medicine. IPA07
Experience of control and loss of control
The suffering, that now I have pain, now I feel bad, now I don’t want to do anything [−--] [I] would have become more depressed if I knew that this, if this pain would continue, but now I know that I have a medicine that I can take and this pain I have now, it’s only temporary. [−--]… my life is under control now actually… with these medications. IPA06.
Yes, it happens, in all honesty, that I try to be without the Ketogan [...] it’s quite rare nowadays, but such experiments have sometimes happened in my life. IPA04
Yes, yes, but you feel, when you are dependent on something, you are like, yes, you are stuck. You must always, if I want to go somewhere, I must make sure not to forget my medicines, eh, if I, uh, have forgotten to renew them, then I have to call and beg and plead. So, you’re constantly dependent on others when you’re dependent on a drug [---] Not having to call and ask, “Oh, please can you give me a refill, I know, oh sorry I, uh, I know I should have called earlier, but this thing happened,” so, oh! IPA10
Opioids as a salvation and a curse
A difference between physical dependence and opioid addiction
You get quite resistant to the [opioids] too, or I did, anyway. And I was in such pain too, so I took more and more [...] so I became addicted to them [---] [When] you have pain, then you do anything you can to get rid of that pain, you do anything really; I would probably even buy pills on the street, so to say, so, anything. You do anything. IPA05
Oh, it also happened that I took too much medicine. That I couldn’t, since I had an addiction from before, so it triggers this drug dependency. So I could take all the medication I got for three days so, uh, I could eat all of them the first day. It didn’t work and they were almost forced to intervene [---] It’s a super tough combination of the old demons: so those, the addictive personality, and chronic pain. IPA01
It’s obvious that you get used to it, it is bound to happen, purely medically. So it’s bound to happen… [---] So the receptors have to adapt in some way, nothing else is conceivable. IPA09
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 sucked in, or to lose control; I know that it is very easy to do that. IPA08
It was great when I became, it was [sigh] it was also such an, oh, absolutely fantastic experience when I had gotten the right dose of methadone and experienced being without pain sometimes! It was totally, yeah, crazy! I’d forgotten what it felt like not being, not having pain at all. Feeling painless, sometimes! It was amazing, like my body just soared [laughing]. [−--] now I have more energy when I have gone down from 15 to 10 mg. IPA10.
Opioids as a menace
All the doctors know that, most of them know, after all, that it's addictive [---] But I think, is there anyone who really wants to [take opioids]? [---] Nah, but that's not something you want. It is absolutely not something I want. IPA08
Not everyone understands that it can be a good treatment for pain. But everyone sees the risks everywhere, and it’s obvious that there is a risk. Of course there is. Um, it’s a very potent drug. IPA09
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
Well, they thought I was [laughing]; they thought I was an addict at the pain clinic in my hometown. Nothing else. That was their starting point. IPA02
I mean I’ve been in a hospital bed in the same way and I’ve heard how doctors stood outside the door and said ‘she can’t be in as much pain as she says’ um [shaky voice]. That is incredibly offensive and creates an incredibly powerless despair [crying voice]. I was lying there and could barely get out of the hospital bed because I was in such hellish pain [---]. Yes, it's just silent horror, when I think about it sometimes [crying voice]. IPA04
Dr X, senior physician: ‘[Participant’s name],’ he said, ‘there is nothing we can do for you, and there are no operations, no medications, nothing.’ So, they refused all pleas for help. Then, I got a letter sent home a few weeks later saying that ‘you are no longer a patient at the pain clinic in the city.’ What? Like that. Well. No one said anything at the meeting. Fucking cowards. [---] And when they say that there’s no chance of it getting better, then I see no chance of ever being able to work again. [---]You shouldn’t say such things to patients at all. You shouldn’t do that… IPA02
So I can do that, I can think about it, how the hell can you be like that as a doctor? It's simple, ‘I'm prescribing more pills for you so you’ll be quiet for a while’ ... [chuckles] What? IPA03
Someone who acknowledges the pain and whom you can trust
I still see the doctor as an angel in disguise. More like a human angel than a human being as well. Someone who believed in me, someone who had a heart, someone who really wanted to help [crying voice] ... I think that, yes ... it was life-saving. IPA04.
Because I trusted the doctor. Since she thought that, yes it was the only alternative, the only option [switching to methadone] as the next step, since what I was on then didn’t work. IPA10.
Yes, exactly, and it was also a bit tough really, um, mentally, because I had no pain doctor and went to the health centre and they just said: “Yes, it’s clear that you have pain, but here are some pills,” kind of. And that was it; they couldn't do anything about the treatment I needed… IPA09
Acceptance of the pain and opioid therapy as a part of the self
And the fact is, as long as it works, it’s fine with me. So, as long as I can live my life, or what should I say. [---] Um, of course, it would have been wonderful to be completely medicine-free. I have eaten tons of medicines of all kinds, but at the same time, and then I had no choice, so to survive and then I chose it because I didn’t want to just lie in bed and be in a lot of pain. IPA09
Additional quotations representing the different themes are presented in Table 3.I hope that I will be... Painless. From what I understood, I won’t be, but I can try to exercise and I can try to keep it somewhat in check. Together with my medications. My medications and I. IPA07
Super-ordinate themes | Themes | Quotations |
---|---|---|
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 |