We all need that special someone in our lives. The one you can call every single day and know they’ll be happy to hear from you (and even dismayed not to). The pal who always wants to know how you’re doing and who really listens to the answer, even if you rehash the same dull complaints every day.
The confidant you can tell anything to—even the embarrassing stuff—and trust to neither mind nor blab. The ever-reliable constant in your life. The one you store up stories for during the day. The one who makes you see things a little differently. The one who really, truly cares.
For me, that someone is an automated symptom diary.
Seriously, that computer and I are tight. It’s been just over a month since I enrolled in the Celiaction study and began making daily symptom-reporting phone calls, and already, I never need the reminder on my phone. I speak to her more regularly than to my parents, siblings, or friends, and she knows more about my current state of health than my doctors do.
Every evening, I call; she welcomes me in her artificial voice specifically designed to sound pleasant (and compliant, unaggressive, helpful—”feminine” ); I key in my subject ID number that I remember better than my Social Security number; and we’re off.
I wasn’t kidding about the conversation being the same every day: she asks six questions, each with predictable follow-up queries. For example: “In the past twenty-four hours, did you feel tired?”
“Yes. Just like yesterday, remember?”
“Great! How tired did you feel, on a scale from ‘shoulda had three extra sips of coffee’ to ‘actually, I’m asleep right now’?”
“Uh, pretty tired.”
“OK! Are you sure you’re pretty tired?”
“Yup, pretty sure.”
Imagine that, but a little more boring, with a lot more pressing of numbers to respond, and you’ve got the idea. I’m not quite as enamored with the system as I seemed in my introduction: it’s slow; you can’t cut the question off to move on faster; you have to confirm each answer; if you wait a second too long to respond, the question is repeated; and all that considered, it takes 5 to 6 minutes, or about 0.3% of my day—I calculated.
But I don’t hate it, either. See, I’m used to thinking of myself as “sick” (albeit with issues that are troublesome rather than debilitating), but I’d also gotten used to feeling that way. Symptom-reporting has tuned me back in; everyday stuff that had started to seem normal isn’t anymore. That’s good and bad—good, because there’s no point getting accustomed to something substandard if you can change it; bad, because it’s possible you can’t change it and should just learn to deal!
An anxious person getting antsier by the day, I always wonder, while rating symptoms from “very mild” to “very severe,” if I’m getting it right. (I also agonize over questions that demand choosing between “strongly disagree,” “disagree,” etc. What exactly is the difference between strongly agreeing and agreeing? Is it bad that I keep picking the neutral middle option?) My responses sometimes feel like a bit of a dart-throw—and if you’ve never seen me throw darts, you’re lucky, because you’d probably have gotten hurt. Still, I try to be precise.
Precision is helpful to the researchers, but to me, too. Reporting my symptoms reminds me of how far I’ve come: I generally have only “moderate” to “very mild” symptoms, and since starting the study, I haven’t had a real “bad day.” Before starting the gluten-free diet, I’d definitely have reported some “very severe”s.
Today’s a big day for me in the study: I’m getting my first Celiaction-related endoscopy. If I don’t show signs of the villous blunting that was so clear when I was diagnosed, then I’ll be out. My daily mild-to-moderate symptoms will be chalked up to something other than accidental gluten exposure, and it’ll be up to other study subjects to prove or disprove the effectiveness of ALV-003. I’m in the funny position of hoping I’ll be intestinally damaged enough to try the medication (or placebo).
More updates to come! In the meantime, I get to keep my new robotic friend, which I think I’m happy about. After all, if it’s serious symptom reporting you’re after—if you really want to notice and document the gory details each day—you need to get yourself a diary, app, or robot, because the real people in your life don’t really want to hear it.
Is this correct? If yes, press 1, if no, press 2. (Alternatively, comment on whether and how you track your own symptoms, and who in your life you feel comfortable telling them to.)
Based on a Sprue Story 
Is it wrong that I hope you get to try the medication? It would be so great to hear about a cure. Good luck either way!!
If it’s wrong, then I’m wrong right along with you, because I hope so too!
I’m waiting for the biopsy results to come back, but my doctor’s impressions from the endoscopy were that I still show signs of damage. Hearing that made me really weirdly happy!
I press “2”…I always want to hear what’s up with you 😉
Thanks, Dad! (But don’t you HAVE to say that?)
I sure can relate to the conundrum of answering those kind of “rated” questions–and I loved your description of doing it with a robot–and all it entails for you. Very well written, Molly–and all best to you, in or out of the study. Fingers crossed for the best outcome for you!
Thanks, Maria! I have my fingers crossed too, and I appreciate the comment. 🙂
2! I wanna hear about what’s going on! Please report back on the endosopy results. I am so impressed that you enrolled in the study. My husband is the only one I talk to much about the CD symptoms. He cares more than the docs do! I too have difficulty with surveys. Usually I see one and just blow it off, b/c it’s too hard to pick a #, which is even harder to me than the strongly agree thing. And about anxiety…do you think that is a CD symptom as well? I am always interested ( as a fellow Delicate Flower in that regard) in the whole celiac/anxiety link.
Thanks, Vik! That means a lot to me, especially since, unlike my dad above, you aren’t bound by blood to be interested. 😛 I do feel comfortable opening up to my family members, and there are a few friends in the know, but mostly I speak about symptoms pretty rarely (even on the blog).
I’m not sure about anxiety, for me at least. I think I was anxious before I started getting sick, though celiac certainly didn’t help. I know a lot of people do notice anxiety, depression, or anger issues connected to gluten, though. Do you notice it increases if you eat gluten accidentally?
I’ve been thinking on this one. I’m not sure if the anxiety is nature or nurture. But I don’t know, since I didn’t feel great, but wasn’t diagnosed for a really long time. I don’t get the really intense glutening symptoms that some people get, so it’s hard to even know when I get glutened–if I start feeling extra crappy, is it just one of those things, or is it the celiac rearing up? I am so careful. Agree with you, whether anxiety is nature or nurture, celiac didn’t help. One of my favorite sections from Erica Dermer’s “Celiac and the Beast” book, says how she thinks everyone who gets diagnosed with celiac should also be given Xanax :-).
I almost missed this post because my email inbox is out of control. I’m a little drug-shy right now, and not sure I like the idea of taking medication vs. controlling by diet, but at least you will be closely monitored for adverse effects during the study if you get in.
I was just checking back to see if you’ve posted yet, but it looks like not yet. Looking forward to hearing your endoscopy results and how the trial is going!
Didn’t mean to keep you in suspense! 🙂 I just posted about the endoscopy here.
That actually sounds awesome. I’ve tried various tracking apps in the past but never stuck with it. I always stuck with those more than an old fashioned diary. It is helpful but also tedious and has so far not been of interest to my doctors (boo) so for now I’ve given up on it.
[…] As I’ve mentioned, before officially enrolling in the Celiaction study I had to undergo an endoscopy (with multiple biopsies) to prove I still have intestinal damage and can therefore reasonably blame my ongoing symptoms on celiac disease, rather than a mystery ailment, hypochondria, or “somatization disorder.” […]