Table 3

Narratives from patients with chronic migraine

ThemesNarratives
1. The shame of suffering from an invisible condition Helplessness: “Helplessness, the sensation of wanting to but not being able to… others go out, they’re as fresh as a daisy, and you, you are completely worn out without even leaving home, that is what it’s like, at times you’re worse than those who went out on the town even though you stayed in.” (patient 9, 28 years old, unstructured interview).
Uncertainty: “You give up hanging around with your friends, you give up loads of stuff, because you don’t know when you’ll have a bout of headache. I’m still with my episodes, without knowing when they’ll come. I’ve been housebound for the last month, in case the pain comes back.” (patient 18, 32 years old, unstructured interview).
“I can’t draw anything clear, specific, just flashes, it’s completely different everyday, there’s nothing stable.” (patient 7, 47 years old, drawing description).
An invisible disease: “It becomes frustrating. At first, I had a scan, then a magnetic resonance, I had many tests and they found nothing! And they told me that everything was normal. I couldn’t prove it and even if they do tests, they can’t demonstrate anything. I was embarrassed to go to the doctor, it was as though I was wasting their time.” (patient 9, 28 years old, unstructured interview).
A long and winding path to diagnosis : “I’ve seen a lot of doctors. It’s been, 7 years I think, and finally, I’m now being seen at the neurology department. You get tired because you say: and now another one, and another…” (patient 14, 46 years old, semistructured interview).
2. Treatment: between need, scepticism and fear Distrust and scepticism: “It is true that the neurologist told me that the treatment was very much trial and error, and that we have to keep trying until getting the pain under control… That doesn’t give me much confidence, does it? I thought it was more standardised, it hurts, it’s due to this disease and then they give you the right pill…but there are not magic pills. I don’t trust treatment.” (patient 1, 27 years old, unstructured interview).
Reaching normality: “I just want to have a normal life, do the same stuff as everyone. I just want to do things without feeling pain, or at least, with a mild one. But, tablets sometimes don’t work. I can see myself reading, walking my dog, but always in pain.” (patient 16, 33 years old, drawing description).
Depending on analgesics: “They’re now a part of me [the pills]… a part of my life… I need them to kill the pain, I live like that, thinking that I’m going to be in pain and I don’t have the pills on me, and you become distressed because you’re thinking: I’m going to be in pain and I don’t have them.” (patient 3, 56 years old, unstructured interview). “If I think that I don’t have them, I’m going to suffer, it’s a constant struggle with my own self, with my pain. If I’ve not got them on me I’m afraid that I’ll be in pain and I’m continually thinking about it, I can’t control it. I can forget my cell phone but not my pills.” (patient 3, 56 years old, unstructured interview). “… eventually you end up with pills in all your bags, with pills everywhere. I don’t have a bag or jeans in which I haven’t got ibuprofen, paracetamol. But that’s also very frustrating.” (patient 10, 27 years old, unstructured interview).
Pharmacological cocktails and self-medication: “And when the pain starts, apart from everything I have to take, I’m already saying: Hey! I haven’t taken this today, let’s see if it does anything. Because it seems like always taking the same thing is as if you’re not doing anything.” (patient 14, 46 years old, semistructured interview).
Lack of adherence to preventive treatments : “My doctor explained to me how important it was to take medication daily, even though there were side effects. I told the doctor, how can you put me on a treatment that already caused me side effects! I remember perfectly, that it caused me side effects… [Imitating her doctor] ‘No, you try it, and if you have any side effects just stop taking it’…” (patient 1, 27 years old, unstructured interview). “I don’t like taking medication to avoid the pain… I don’t like it because I’ve never taken so many pills in a day, because if I’m in pain, of course I’ll take five pills, and if it hurts more, I’ll take 6 or 7. I don’t like the feeling that I’m taking pills all the time.” (patient 11, 20 years old, semistructured interview). “What I don’t want is to get hooked… I don’t like addictions, so, because I think that… that it’s like being really addicted, I won’t be happy or I’m not going to feel OK, you understand? Why take medication if I don’t have pain?” (patient 6, 41 years old, unstructured interview).
3. Looking for physicians’ support and sincerity, and fighting misconceptions Clear information and sincerity: “I haven’t been given an explanation, I was told its name and little else. The first neurologist told me that I had chronic headache, with no explanation, nothing. The next doctor told me that I had chronic migraine because I’d had them for more than 15 days or something like that. But I think that they should explain something more about the aetiology, it’s because of this, because of that.” (patient 19, 22 years old, semistructured interview).
Support and involvement: “They abandon you in the sense that the doctors relax and say that there is nothing to be done. Also, in terms of treatments that really work, with all the advances in medicine, and they still can’t make the pain go away.” (patient 3, 56 years old, unstructured interview). “It’s like no-one has paid any attention to me! When a person has headaches on two or 3 days a week, that seems a lot to me, right? Sometimes I even leave the doctor’s depressed and I say: but what have I got that no-one pays any attention to me? Will nobody ever take me seriously?” (patient 7, 47 years old, unstructured interview). “At my first neurology appointment, I was not given any contact phone number, I left the consultant with some medication and if it doesn’t do me any good, I wasn’t to have another appointment with the neurologist for 3 months. To have that phone number, even if you never call, makes you feel more secure, being able to ask for help if you need it.” (patient 12, 47 years old, semistructured interview).
Situations that hinder doctor–patient relationship: “It seems that they are trying it on with you, they know that this medication isn’t going to do anything for you and yet still they prescribe it. If they know that it isn’t going to have any effect on you then why do they prescribe it?” (patient 14, 46 years old, semistructured interview). “I have the feeling that when they listen to you, they think that pain is something normal that happens to women. Like the joke: she’s got a headache.” (patient 7, 47 years old, unstructured interview). “Is there a history of headaches in your family? And you go to another doctor and the same question: and is there any family history…? There comes a point when I stopped mentioning it. It seems like they give up on you, they relax when they know there is a family history [of migraine]. Even when it comes to performing tests, they tell you, ‘Since there is a family history there is nothing we can do, if this is migraine, that’s that…’ Come on! you give them information that they use against you as they please.” (patient 3, 56 years old, unstructured interview). “If the GP doesn’t consider it sufficiently important so as to refer you to a neurologist, to perform a CT scan, a magnetic resonance or whatever it takes, you’re stuck. And for years and years. I had to be hospitalised eight times before I was finally referred to the specialist. It sounds pretty bad, right? After 9 years.” (patient 15, 29 years old, semistructured interview).
4. Limiting the impact on daily life through self-control Everything revolves around pain: “Migraines make me cut myself off, they don’t let me be the person I am. They mean I can’t live my life. It’s sad that thanks to a migraine you have to cancel everything, you can’t carry on with your life as normal. When you are somewhere, there you are and suddenly, it comes on and you have to go. It affects you to the point that you have to isolate yourself, you have to leave. It cuts you off from being with others, it separates you from everyone else.” (patient 4, 63 years old, unstructured interview). “My life is conditioned by something that is not even considered serious! I want to end this, I want my head to stop hurting, I want it to stop affecting my whole life. I need it to stop to live a normal life… to forget worries that others don’t have.” (patient 5, 23 years old, unstructured interview).
Resignation: “It’s like a life with a chronic illness that ultimately wears you out because you’re always in pain. In the end, you end up getting used to the pain and you resign yourself to living with it, and you think it’s never going to change: ‘Another shitty day.’ The pain ends up being something normal and I got used to it. No… [she clicks her tongue] the word is I became resigned to it.” (patient 8, 21 years old, unstructured interview). “There comes a time when you become used to living with the pain. Then, the day that there is no pain, you say: ‘Oh, great! There is no pain at all…’ The pain is routine.” (patient 13, 56 years old, semistructured interview).
Change of lifestyle: “You are conditioned by the lifestyle you have to follow, where you work, how much you work. Everything, family life … it affects everything. You can’t lead a normal life, you can’t go out dancing, to dinner, to the cinema. It’s not the influenza, it’s not cancer thank god! But sure, it’s something that changes the way you live.” (patient 15, 29 years old, semistructured interview). “It restricts my daily activities. It limits the time I can spend with my friends and even the desire to do sport. It has affected my lifestyle and my mood too. I’m more down, less lively, whereas I’ve always been very independent, very active, it’s a little bit like being disabled.” (patient 8, 21 years old, unstructured interview). “I quit drinking coffee. I’ve switched to decaf because all of that is bad for you… I had a perfume that I couldn’t use because my head started to hurt… and so, now, what can I do? What can I drink, what can I take?” (patient 17, 52 years old, semistructured interview).
Mood changes and irritability: “My family does influence me, especially my husband and son. I just start to shout and I get into a bad mood. What happens to them? Well, they pay for my suffering and I realise that that’s not fair.” (patient 14, 46 years old, semistructured interview). “Well, when I am like that, so bad tempered and I don’t want to have anything to do with anybody. I get in such a bad mood that I can’t stand anyone, you’re irritable, you do not want anyone to talk to you, no-one to tell you anything… and since they don’t understand, on top of that you get furious, you get frustrated and you even feel isolated.” (patient 10, 27 years old, unstructured interview).
Self-control: “You try not to let it affect you, to control everything, to deal with it, to be conscious of everything that might cause you pain… but it is very tiring, it’s exhausting. Sometimes I get up and think ‘Oh, no!’, and I take a pill and just go back and rest.” (patient 9, 28 years old, unstructured interview). “I have so many things to do that I cannot always be lying down in pain. Who’s going to clean? Cook? My husband helps me a lot but there are things that no matter how much someone helps you, it is better to do them yourself. Besides, I don’t like feeling like an invalid. I try to tolerate the pain as much as I can.” (patient 6, 41 years old, unstructured interview).
Pregnancy: “Migraines during pregnancy were terrible, tremendous. It was the biggest sacrifice I’ve ever made in my life, as you can’t take anything except paracetamol. It affected me a lot, because you’re limited to mild drugs and you can’t take the stronger ones. I spent the whole of my pregnancy here at home. I stayed completely away from the outside world to avoid any situation that could trigger my pain. I didn’t take the underground, the bus. I went to the supermarket at 2, 3 or four in the afternoon, when there were fewer people, not in the morning, not at night. Being pregnant changed everything for me, radically.” (patient 15, 29 years old, semistructured interview).
5. Family and work: between understanding and disbelief Lack of understanding at work: “My workmate told my bosses that if I had a headache I should take a pill and that it was no excuse not to go to work. Things like that every day.” (patient 1, 27 years old, unstructured interview). “I think that like any other pain, those who don’t suffer from it don’t understand. Ignorance leads to incomprehension. It is a condition that has a bit of a bad reputation.” (patient 2, 50 years old, unstructured interview).
Hide symptoms and diagnosis: “You often try to hide it. You hide it because people don’t understand how a simple headache can affect you so strongly. Besides, I don’t want to be a nuisance. They may think that you are a hassle or a drag, or that you are pathetic.” (patient 3, 56 years old, unstructured interview). “I’ve always treated pain as a personal matter. I don’t confide in anyone because I don’t think they can help me. It would even compromise my credibility in terms of my ability to present projects. It would weaken me, you wonder whether a person who always has a headache would be able to do some things or not.” (patient 15, 29 years old, semistructured interview). “If I had a business I would also be sick to death of a person who has been working with me for 3 months and has missed work three times, 3 days in three different months. Then, eventually it’s going to happen [getting fired]. Imagine that you have a worker who is good at her job but you do not know when she’s going to get sick, you can’t count on that person because she may have to go home and perhaps you’re left stranded on the busiest day of work. Who in their right mind would hire a person like that?” (patient 5, 23 years old, unstructured interview).
Obligation to stay at work: “I don’t stop doing my job because of my headaches because if you start missing work, then you can pack your bags and go. I don’t think anyone would like an employee, who is often off sick, whatever the illness. I always try and fulfil all my obligations.” (patient 18, 32 years old, semistructured interview). “I was taken by ambulance to A & E and my partner [hairdresser] finished her shift at 10:00 pm, because she had to deal with all the people that I should have looked after. And while I was with the doctor, I kept repeating [to the doctor] ‘I have to go back’, and the doctor said to me, ‘Don’t you see that you can’t?’” (patient 5, 23 years old, unstructured interview).
Understanding in the family: “I know that they want to help, they are more interested and ask frequently. Obviously, they are closer than my co-workers. They try to understand my pain, to understand me.” (patient 18, 32 years old, semistructured interview)
Scepticism in the family: “Powerlessness, they don’t believe you! It really hurts! And there comes a point where you don’t even say anything because if they are not going to pay attention to you, then what for. They think you’re making excuses.” (patient 9, 28 years old, unstructured interview). “They cannot understand that you have this kind of headache, they do not know how much it hurts because they compare it with the headaches that they have, and of course, they don’t hurt as much. Then ‘…There she is again with her headaches’.” (patient 10, 27 years old, unstructured interview).
Concern about the children: “I should have been paying more attention, he used to wake up very early to study, I should have been aware to stop him from getting up so early in the morning. He has started with headaches and they are very strong. Last Tuesday we were at A & E all afternoon… I should have been more vigilant and stopped him from seeing how much they hurt me.” (patient 2, 50 years old, unstructured interview). “And my son is just starting, as a 14 year old he complains of headaches a lot. He complains a lot but I still think he’s too young to have headaches. It’s been a couple of years now. Has he copied me or are they really painful? I think I have influenced him in some way, I don’t know.” (patient 14, 46 years old, semistructured interview).