Table 6.

Emotional and Psychological Experiences

Concept	# Interviews Coded	Definition	Example Quotes
Feeling heard	29 (Study 2 only)	Experiences with feeling dismissed or not taken seriously, or experiences with feeling heard and supported by people around you	Most of my friends are very understanding, and they’re like, “Oh, yeah, whenever you can, and if you cancel, we totally understand. You can cancel last minute.”…They know what’s going on. I went to 20 doctors in eight years, and they’re basically like, “You’re fine. It’s all in your head. You’re too young to be sick”…they dismissed everything. So, that was really frustrating.
Well-being	27 (Study 2 only)	General ability to achieve a state of being comfortable, healthy, and happy	So mostly I’m just staying home all the time. It gets pretty boring…it’s really hard on me, because, you know, like, I’m an adult, and I want to do stuff. I want to do stuff for my own as well, but I really can’t do stuff…it’s being crippled in a lot of ways. I just want to be normal. I’m not enjoying this, I’m not enjoying life like this. I just want to be normal, whatever normal is. Pain free. That’s it. Migraine free.
Identity	26 (Study 2 only)	Self-image, sense of individuality, and ability to be the person you want to be	I’m never as smart as I used to be, let’s put it that way…I want to be smart again. I just want to be me. I want to be me again. I think it triggers me to imagine the fact that I cannot have a life outside of work or a life that doesn’t involve being sick…And so, I think those - when I am able to do those things like exercise and all these things, then I feel like, no, I have a life outside of this. I’m a person outside of my illness.
Anxiety	49	Experiences of anxiety as a symptom or result of an attack, anxiety about having attacks, or anxiety about the impacts of migraine on one’s life	You know, so I think I kind of live in fear. So, even when I don’t have a migraine, I’m afraid that I’m going to have one or that I’m going to somehow trigger one. Yeah, one of the other things too is I start to feel anxious. Anxiety plays a part, because I know it’s coming…I start thinking about, OK, how bad is this migraine? What am I going to take for it? How long is it going to last? What do I have to tell people around me for the rest of the day or the night? All that anxiety, I guess, just makes it worse.
Anger or frustration	38	Feelings of anger or frustration related to migraine	I also feel frustration and guilt sometimes, like if I shirked my duties for days or I haven’t gotten anything accomplished at work. The frustrations that have come with not having health insurance, not having great answers, and really just, at this point, feeling like I have to live with this.
Depression	39	Feelings of depression or sadness during an attack or because of the cumulative impact of migraine on one’s life and well-being	I get super, super depressed and really quickly, almost like whiplash almost, where an hour ago, I was totally fine. It just makes your life a living heck. But I’m depressed all the time with them. All the time…I’m very agitated. I’m very depressed all the time. Because I just can’t get my life together.
Irritability	41	Feelings of irritability that occur like a symptom, often beginning in the pre-headache period and increasing during the headache phase, but occurring after the headache as well	I’m more irritable. I’m definitely irritable. Because I’m generally - I’m a people-person, so I like dealing with people. But during a migraine I’m just like, leave me alone I’m just more like - I would say like easily, easily agitated, like I get more aggressive with my kids, like just leave and just - I’m not patient at all or my normal self.
Feelings of relief	42	Feelings of relief or invigoration that occur when an attack ends or during a migraine-free day, sometimes accompanied by a strong desire to catch up on missed activity	And when I have a good day, I’m excited. There’s a relief when I have a good day, a tremendous relief…a migraine free day is a gift, and I take them that way. I don’t take them for granted. Absolute relief, because it’s like, oh my God, it doesn’t hurt anymore. It’s like thank God. It is the best euphoria…So it’s like the reward. It is just total excitement, like yes, it’s gone. Now I can function.
Feelings of increased or decreased energy or drive	16 (Study 2 only)	Impacts of migraine on energy, including reduced energy during or in between attacks, or experiences of increased energy during interictal phases	Between headaches, I get this period that I really want to sleep. Like, I don’t want to do anything other than just sleeping. Sometimes also, I have a little bit of energy, and I’m like, oh good, I’m finally going to come out of this…But it’s the energy level. It just really feels like somebody’s sucked the life out of you and you’re trying to get a little bit back.
Skepticism	15 (Study 2 only)	Feelings of skepticism during an attack about one’s ability to gauge symptoms, or in between attacks regarding treatment efficacy or individual and healthcare provider ability to understand and manage migraine	I have doubts how well I can cope…I’m sure people do this, but sometimes I question my own sanity. Am I really feeling as bad as I think I’m feeling? Answer is probably yes. But I do question myself. I said to a doctor, which I think offended him maybe a little, because he told me how bad he feels, and I said, “I feel worse for you guys.” And he says, “Why do you say that?” I said, “Think about it. You went to medical school. You do fellowships. You’re double-, triple-board certified. And you still don’t seem to know anything about this.”
Guilt	24	Feelings of guilt related to impairments during an attack, inability to keep commitments, or burden placed on others	I feel bad because I feel like everyone’s always having to adjust how they are for me…I’ve always felt like I’ve been an imposition on my family because they have to change how they are. I could probably take the time off, but I just always felt so guilty because you don’t want to be the person that’s unreliable, especially at work, especially if you have big due dates coming up.
Happiness or euphoria	25	Feelings of joy experienced when an abortive medication works, an attack ends, or when experiencing migraine-free days	I have joy in my life, and I definitely - there is sometimes when it’s like - you feel the med work suddenly, and that’s rare. Usually, it’s just kind of a gradual - the pain dulls, and you’re like, oh, it stopped. But sometimes, boom, ah, I feel it, and there’s definitely a smile on my face.
Embarrassment	10 (Study 2 only)	Experiences of embarrassment during and in between attacks related to impaired ability to speak or having to cancel plans	It’s very embarrassing, especially in business. You’re talking to a new client and your words come out all jumbled up or you just stop talking, and they don’t know what’s going on.
Grief	3 (Study 2 only)	Feelings of grief over lost opportunities and time due to migraine	I lost my career to migraine…I grieved a lot for my career, because I’m a single woman…my image of myself was a lot tied to my career, and so when that was gone, it was like, ugh, what am I going to do?
Other positive feelings	5	Included feelings of hope for the future and a deliberate, positive attitude	Migraines are debilitating…But they’re coming out with new medications, so it’s hope for us migraine sufferers, and we just hope they get them on the market…You’ve just got to look at it, like, you know, with some positivity that they’re working on it behind the scenes. We might not see it every day, but they’re working on it.
Other negative feelings	17	Included a negative outlook on the future and thoughts of feeling like a failure	When the headache pain is going on, there’s that feeling of, this is forever, it’s not going to go away this time, this is it. During the after-pain, that feels so temporary and so fleeting, like any minute it’s going to come raging back. So, it’s the result of not being able to do something, feeling like a failure, feeling lazy.
Accepting or adapting to life with migraine	23 (Study 2 only)	Accepting life with migraine as a “new normal,” developing a sense of tolerance about one’s experiences, or embracing a positive attitude by focusing on what one can do rather than on what one cannot	I’ve tried to adopt, let me call it, more of a can-do attitude…I try to keep a positive kind of spin. Like, I ask myself, instead of “what can’t I do,” what can I do?” I think that the biggest thing is just respecting it and kind of maybe treating it - basically to stop resisting. To treat it more like a friend and try to understand it rather than this uninvited intruder because that just makes it worse. I need to work with it and not against it.
Stigma	26	Experiences of stigma from interpersonal relationships or broader society (e.g., health care system, workplace environment)	I had an emergency room visit [with severe migraine], and I felt like the doctor was treating me as if I was a drug seeker and didn’t really want to listen to what I was having to say. There’s an awful stigma about migraines. The whole “just a headache” thing.
Life satisfaction and meaning	16 (Study 2 only)	Perspectives on how migraine affects overall satisfaction with life or the sense that one’s life has meaning	It’s not the pain. It’s what I’m missing out of because I have migraine. It’s what I can’t do or what I would like to do that doesn’t happen because of my lack of functioning, whether that’s taking care of my kids, holding a job, feeling fulfilled. I think my quality of life is pretty low…I live kind of like a hermit.