| Theme 5: Fear and avoidance |
|---|
| Subtheme |
Representative quotations |
| Pain catastrophizing worsens migraine and induces fear |
“I’m fearful [the migraine attack is] not going to go away and I don’t know what I’m going to do about that” “….When I could calm myself down and not be so emotional about [the migraine], that was a big factor. The fear of it had made it worse …” “I only focus on the pain … I cannot function” “… There is definitely a [mind-body] connection. [If] your mind brought on [a panic] attack, your mind can probably prevent them. For the [migraine attacks] related to stress … I sometimes bring them on, and I have the power to lessen them, and I accept that …”
|
| Anticipatory anxiety induces fear |
“They cause a lot of anxiety because I don’t know when I’m going to have one and I’m fearful I’m going to have one when something comes up. And when I have one, I’m fearful it’s not going to go away” “I was all the time waiting when my next migraine was going to come, like I was anxious about it. I was expecting it in a negative way” “I would go out for the whole day and don’t have my [triptan] with me and hope I don’t get a headache today and so it’s still bothersome. I try to have a [triptan] in every car that I drive, in my wife’s car. … I travel a lot for work so I always [have to] make sure that I don’t get somewhere and not have any” “I always worry about whether they’re going to happen. I rarely miss work. I can work through it if I take a[triptan], but I’m always worrying about running out of [triptans] because I only can get 9 [per] month. Sometimes I have to stop and slow down because of them” “… also the anxiety about it, being anxious about maybe having to leave work or maybe not do things at home, maybe not cook dinner” “[Migraine attacks] interrupt my day and they make me worry I won’t be able to participate in my daily activities and work which is painful and frustrating. But for now, I have medication that stops them so that at least I can continue with my day so. It’s scary because I’m right on the cusp of having more than I can treat with my medicine”
|
| Avoidance behavior due to fear of migraine or fear of migraine trigger |
“I can only go places during a certain time of the day. If I have to leave in the middle of the day, I can’t really leave because the sun is just so incredibly awful. There are certain places I just can’t go. There’s just a lot of stuff I can’t deal with anymore. Like, taking kids outside, I can’t go outside because of the traffic and there’s a place behind our apartment that smells awful sometimes” “… I look for what my migraine triggers were, so I avoid it. I avoid restaurants with ceiling fans, I avoid venues with light shows …” “Before I had kids, I was a teacher … I was able to identify triggers like smells were a big trigger so I would avoid perfume counters and certain students. I would literally walk outside the building to go around to my classroom rather than walk in that hall because I knew it would give me a migraine. They weren’t debilitating but at the same time they affected my life to the point that I would come up with hacks for daily living, you know …” “I’ve stayed away from some of the things I ate on a regular basis before …”
|
| Theme 6: Stigma surrounding migraine |
|---|
| Subtheme |
Representative quotations |
| Externalized stigma: participants feel judged |
Lack of knowledge in the community“You can’t see our [migraine attacks], and you may see the tears, but because folks can’t see our [migraine attacks], they often dismiss them … It is, as intense and painful as a lot of things that have visible symptoms”
Feeling judged for migraine’s impact on role functioning
“Everyone is pretty understanding if they know I have a migraine they know I’m in my bedroom laying down and no loud noises. It’s kind of hard to keep a job if your employer isn’t understanding so I feel like some of my family members kind of judge me because they don’t really know what a migraine is. They’ve never had it they just think it’s a headache and it’s not just a headache” “You realize that people just don’t understand. [Prior to the study] I [felt] guilty all the time, [but now I realize] it’s not just me and I can kind of be okay with it now” “And the stress of not knowing when they are going to come might also perpetuate problem. And also, planning out events in the future, and hoping when I plan a trip I can relax. Then I go on a trip and get a migraine and everyone hates me”
|
| Internalized stigma: participants feel different than others |
“When I used to get [migraine attacks], I’d put a lot of blame on myself and get frustrated that I had a migraine and angry at myself that I couldn’t get rid of it … [I blame myself] because I have a rotten brain. Why do I have a defective brain? I just blame myself. It’s my brain so it’s my fault” “So I think just knowing the impacts of, that it’s normal that it affects your work, its normal that it affects your home life, because sometimes you feel a little abnormal” “They make you kind of feel like you’re walking around with a weight on your shoulders” “[Knowing others have migraine too] makes you feel less abnormal” “My personality is different [because of migraine]”
|
