Compared to the ratings in a person’s headache or pain diary — if it’s kept faithfully — most people who rate their pain retroactively recall it as worse than it actually was. I too have a recall bias, but it’s the opposite effect. I think of the pain and other symptoms of my chronic daily headaches and migraines as much less than it really was.
When someone asked me on Monday how I’d felt in the past week, I said that it had been a pretty good week. I thought that was right, until I reflected on the week. My pain and other symptoms were severe at that moment. Saturday and Sunday were terrible — until I took a nap and drugged myself up so I could enjoy myself each night. Friday I was pretty sure my migraine was going to kill me. I didn’t post on Thursday, which only happens when I’m miserable and can’t think.
It wasn’t because I wanted to hide the severity of my migraines from this person, who is a health care provider that I’m currently seeing. I was protecting myself from the truth: I had a horrendous headache for at least a few hours every day that week.
A headache diary makes me confront reality. It’s too sad to think about.
I stopped keeping a daily diary too. There were no discernable patterns after over a year and WAY too depressing. The only connections I got was having bad headaches after dental work or getting my hair washed at the salon (no brainers on those, both affect my neck).
I do, however, put a smiley sticker in my pocket calendar when I have a headache free day, and keep track. Sometimes that’s depressing too, but at least it’s a tad more positive. I do write down if I have a particularly awful headache (like an 8-10 type or a really bad migraine).
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I like the idea of using a positive reinforcement approach. Maybe I need some gold stars for my low-symptom days.
Kerrie
Hmmm….are we certain that rheumatologic disease is the same as headache in terms of recall? Also, two weeks is not a long period of time. I’d like to see more studies on this–and ones conducted on actual headache patients.
I do know that studies of headache in pregnancy had been considered inadequate, as they were recall surveys conducted in the postpartum week, asking women to recall what their headaches had been like during pregnancy. There have since been two well-designed diary studies of headache conducted during pregnancy, which have resulted in very different results than the recall studies. These showed that women had more headaches during pregnancy in the diary studies than they had reported in the recall studies.
In general, we do not remember pain well. Otherwise, we’d all be only children. 🙂
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Good point. I’ve got it stuck in my head that headache patients’ recall of previous episodes are notoriously inaccurate. Those words exactly. For the life of me, I can’t remember where that came from.
I’ll keep my eyes open for more information. I’m curious to see how/if patients remember non-pain migraine symptoms too.
Kerrie
I used to keep a headache diary, but when I saw that I was writing an entry every day, I got depressed and stopped writing in it. Now and then I’ll write an entry for a particularly bad migraine, but it’s kind of an “out of sight, not entirely out of mind” thing for me.
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It’s good to know I’m not the only one!
Kerrie
I’m keeping one currently in preparation of seeing a migraine specialist…and I do the same thing, I thought I was doing pretty well lately, and now as I write everything down, I realize that I’ve only had a couple completely symptom free days this month, which is totally not what I would have said if someone had asked me.
I don’t think its deliberate. And I don’t think I’m trying to fool other people… Part of me thinks that after 25 years of this, as a survival mechanism..I just forget how often it happens or how bad it is…because if I didn’t forget …I probably wouldn’t still be here. But I am, so I’m grateful for my twisted view of my disability. 🙂
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“Survival mechanism” is a terrific way to put it. I, too, am glad that I have a twisted view of my illness!
Kerrie