"You're killin' me, Smalls!"
"Smalls" in this case being my ever-loving e-diary. If you've ever hung out with me at night, you've seen me pull it out of my purse, probably shake my head at it, then fill it out and throw it violently back into my purse. I've been asked why I have a second phone. If you didn't ask me, you were probably shaking your head like, Mmmmmhmmmmm. That's okay; it looks like one. It also has an alarm on it that I can't turn off, so it goes off every night at 7:00 p.m., whether or not I've already filled it out for the day. Sometimes, the additional reminder alarms go off at 7:30 and then again at 8:00, even if I filled it out at 7:00. This is not supposed to happen, but hey, technology, right?
Except consistency...
**OBLIGATORY DISCLAIMER: Before anyone starts preaching at me, I do not know anything about the actual people who designed this study and are analyzing its data. These thoughts and opinions are solely my observations. Nothing more.**
Okay, now that that's out of the way... My real issue with this thing is that I don't feel like the person who designed the nightly questionnaire has endo or has ever really had an in-depth conversation with anyone who has endo. This person or team of people is clearly familiar with endo in the clinical sense. They have done their homework and read the information. But it seems like that's all they have done. I say this because the questions—and more specifically, the answers I can choose from to answer those questions—just do not give me an opportunity to describe my daily life with endo. For example, the alarm on my e-diary goes off at 7. I can change that time if I need to, but it has to be completed by 11 p.m. This leaves me with a very specific conundrum: The diary asks me about my pain level and how much pain medication I have taken for the day. If I complete the diary at 7 p.m., both of those things could change drastically before I go to bed; therefore, I haven't given accurate information to the study, which I desperately want to do. However, if I try to wait until the last minute to complete it, there's a good chance I will fall asleep without doing it, which is also not helpful. I think I would probably capture more accurate information, and forget about it less frequently, if I could complete it in the morning for the previous day.
Another big problem I have with the e-diary is that it asks me daily to rate my pain during intercourse. Now, most of us with endo are not having intercourse on a daily basis—it's just not physically possible. But my problem is not with answering this question daily. I understand why it is asked (though I think better phrasing would be, "On the off chance that you maybe had sex today..." 😂). My problem is the answers we have to choose from: "Not applicable (I was not sexually active for reasons other than endometriosis)," "None (no discomfort during)," "Mild (I was able to tolerate the discomfort during)," "Moderate (intercourse was interrupted due to pain)," and "Severe (I avoided sexual intercourse because of pain)." These answers are problematic for me, because (1) if I am interrupted due to pain, I consider that pain to be "Severe" rather than "Moderate"; (2) the description of "Severe" is confusing for me because the question itself asks about pain during and there's no option for severe pain during; (3) I am always hesitant to select "Severe" when I am avoiding it, since I am usually avoiding it because either I know it is going to hurt (even if I am not in pain, I can usually tell when it's going to hurt based on the level of pain I have when using the restroom—yes, that's a real thing) or I am scared that it is going to hurt and that kind of fear just does nothing for my sex drive. I spend way too long trying to answer this question accurately, because I feel like it's important that I do. I'm just not sure how to do it.
The final problem I have with this diary is the first question about daily consumption of pain meds (there are two). It asks how many over-the-counter pain meds (ibuprofen, acetaminophen, etc.) you have taken that day, but here again, I cannot always answer this question accurately, because the maximum number you can enter is 12. On a day when I'm having a flare up, I may have taken 12 ibuprofen by noon; who knows how many for the rest of the day. I had a minor-ish flare up yesterday, and I took 10 for that. (Side note: Since I've started traveling so often for work, I've noticed that flying causes me to have these minor-ish flare ups. It's weird, and I would like to know the science behind that. More info TBD, maybe.) So to limit the answer choices to 12 is again not capturing completely accurate data for this study.
Hey, researchers, guess what! When you publish final results for this study, I already wrote part of your "Lessons Learned" and "Directions for Further Research" sections. You're welcome. (I KID, chill.)
All of that being said, there are different questionnaires I complete at my monthly research appointments that allow me to capture my experiences much more accurately. I just wonder why there isn't more consistency between the daily e-diary and the monthly questionnaires. Those ask me about how I'm feeling (frustration levels with endo, any depression, any quality of life issues, specific instances of daily life that cause pain [e.g., sitting down], etc.). I really feel that those were written in consultation with someone who has endo, and I wonder why the e-diary is so meh. But, again, these are just my opinions. Being a test subject is weird. Thanks for letting me vent. Enjoy your night!
Until next time.
Yours,
Test Subject 521-002
Except consistency...
And if I forget to fill it out before 11:00 p.m., well, all bets are off for that day. If I get busy, or if I fall asleep, or if I go out and I forget to bring it with me and I get back home at 11:01 p.m., no dice. It counts for the next day and screws EVERYTHING up. But aside from these annoying, yet minor and in no way life altering, technological inconveniences—and the fact that it scares the crap out of me every night at when that alarm goes off because I still haven't gotten used to it—my real issue with this thing is that I don't feel like the person who designed the nightly questionnaire has endo or has ever really had an in-depth conversation with anyone who has endo. Now, before you lose your mind, be aware that I am expressing an opinion.
Okay, now that that's out of the way... My real issue with this thing is that I don't feel like the person who designed the nightly questionnaire has endo or has ever really had an in-depth conversation with anyone who has endo. This person or team of people is clearly familiar with endo in the clinical sense. They have done their homework and read the information. But it seems like that's all they have done. I say this because the questions—and more specifically, the answers I can choose from to answer those questions—just do not give me an opportunity to describe my daily life with endo. For example, the alarm on my e-diary goes off at 7. I can change that time if I need to, but it has to be completed by 11 p.m. This leaves me with a very specific conundrum: The diary asks me about my pain level and how much pain medication I have taken for the day. If I complete the diary at 7 p.m., both of those things could change drastically before I go to bed; therefore, I haven't given accurate information to the study, which I desperately want to do. However, if I try to wait until the last minute to complete it, there's a good chance I will fall asleep without doing it, which is also not helpful. I think I would probably capture more accurate information, and forget about it less frequently, if I could complete it in the morning for the previous day.
Another big problem I have with the e-diary is that it asks me daily to rate my pain during intercourse. Now, most of us with endo are not having intercourse on a daily basis—it's just not physically possible. But my problem is not with answering this question daily. I understand why it is asked (though I think better phrasing would be, "On the off chance that you maybe had sex today..." 😂). My problem is the answers we have to choose from: "Not applicable (I was not sexually active for reasons other than endometriosis)," "None (no discomfort during)," "Mild (I was able to tolerate the discomfort during)," "Moderate (intercourse was interrupted due to pain)," and "Severe (I avoided sexual intercourse because of pain)." These answers are problematic for me, because (1) if I am interrupted due to pain, I consider that pain to be "Severe" rather than "Moderate"; (2) the description of "Severe" is confusing for me because the question itself asks about pain during and there's no option for severe pain during; (3) I am always hesitant to select "Severe" when I am avoiding it, since I am usually avoiding it because either I know it is going to hurt (even if I am not in pain, I can usually tell when it's going to hurt based on the level of pain I have when using the restroom—yes, that's a real thing) or I am scared that it is going to hurt and that kind of fear just does nothing for my sex drive. I spend way too long trying to answer this question accurately, because I feel like it's important that I do. I'm just not sure how to do it.
The final problem I have with this diary is the first question about daily consumption of pain meds (there are two). It asks how many over-the-counter pain meds (ibuprofen, acetaminophen, etc.) you have taken that day, but here again, I cannot always answer this question accurately, because the maximum number you can enter is 12. On a day when I'm having a flare up, I may have taken 12 ibuprofen by noon; who knows how many for the rest of the day. I had a minor-ish flare up yesterday, and I took 10 for that. (Side note: Since I've started traveling so often for work, I've noticed that flying causes me to have these minor-ish flare ups. It's weird, and I would like to know the science behind that. More info TBD, maybe.) So to limit the answer choices to 12 is again not capturing completely accurate data for this study.
Hey, researchers, guess what! When you publish final results for this study, I already wrote part of your "Lessons Learned" and "Directions for Further Research" sections. You're welcome. (I KID, chill.)
All of that being said, there are different questionnaires I complete at my monthly research appointments that allow me to capture my experiences much more accurately. I just wonder why there isn't more consistency between the daily e-diary and the monthly questionnaires. Those ask me about how I'm feeling (frustration levels with endo, any depression, any quality of life issues, specific instances of daily life that cause pain [e.g., sitting down], etc.). I really feel that those were written in consultation with someone who has endo, and I wonder why the e-diary is so meh. But, again, these are just my opinions. Being a test subject is weird. Thanks for letting me vent. Enjoy your night!
Until next time.
Yours,
Test Subject 521-002
Comments
Post a Comment