How to talk to doctors in order for them to work for us

This post and some subsequent posts have been split from
Denmark: A short report from 19 home visits, August 2022, by Peter la Cour and Susanna la Cour

Code:

https://www.reddit.com/r/covidlonghaulers/comments/wr4fqj/how_to_talk_to_doctors_in_order_for_them_to_work/

 

Thanks for sharing this Arnie!
Probably taking things off topic here but - it made me notice something I have such a strong reaction to - I wonder if anyone else feels the same / opposite, or has any thoughts on it;
I have such a negative reaction to the idea of keeping a daily symptom diary.
I'm not entirely sure why, and I'm trying to work it out now that I've noticed.
Some possible reasons -
- I don't think the benefit justifies the "cost" (energy expenditure to keep the diary etc)
- Just doesn't seem... useful...? Maybe because I'm not really sure what to do with the info (I appreciate in the above example it's for a very specific use case so that's what to do with the info)
- Maybe I get frustrated because isn't one of the fundamental problems that we don't have an effective / accurate / useful way to measure what's happening in the body?
So it feels a bit like saying "keep a diary of how strong you think the wifi signal is in your house from day to day".. I mean - sure - I know when the wifi is better or worse... but that's clearly not useful data compared to the actual data that is accessible...
Maybe that's not a good analogy... maybe "keep a daily diary of what you reckon your Vitamin D level is"... I don't know!

And I think also, maybe it's very reductive, but the best thing I could say in a symptom diary would be - "I feel terrible, all the time, every day, there's clearly something wrong."...... ha!

Yea interested to know if anyone else has a similar reaction / feeling about the daily symptom diary idea thing..

 

I have this problem too. And given that doctors think that patients like us are obsessed with our health and shouldn't be thinking about it so much it isn't logical to ever mention it or show it to a doctor.

 

I would not take the time or waste my energy on a symptom diary one look at a doctors face when you have a short list of symptoms that are giving you enough grief to actually want to discuss them with your gp s enough not to ever bother again . with our gp practice you are expected to book an appointment for each symptom such stupidity is infuriating .

 

Many years ago I recorded all I did in fifteen minute intervals for over six months and then repeated it for two week annual activity audits over several years. I entered the data into a data base which was set to automatically provide graphs of changing activity levels.

I personally found this particularly useful in spotting delayed responses to things, such as my food intolerances and what I now know as PEM. Also it helped me understand my need for what I label ‘distraction rest’, which then was hours of mindless day time TV that enabled me to be physically inactive without getting too desperately bored and depressed. (Note. This was very dependent on my then level of health and would not have been possible had I been any worse at that time as such recording activity would have had too great an energy cost. Later too, as my condition worsened, I had to learn to endure total rest as the energy cost of distraction also became too great.)

Much of this activity monitoring would have been unnecessary had I had someone to explain such as delayed PEM, delayed impact of food intolerances and that the energy costs of an activity are also influenced by sensory intolerances and orthostatic intolerance early on in my ME. I like many people am bad at spotting causal relationships when there is a significant time gap between the cause and the effect, which however when with the graphs the activity peaks and troughs become very apparent; I wasted a lot of time and energy developing an understanding of what should be very basic concepts explained to everyone when first diagnosed.

Personally I psychologically struggle with pacing and find it really hard not to push on through to get things done and this record keeping helped me understand that. However I never discussed it with my doctor, though I did discuss the results with the local specialist ME/CFS service I saw.

My thoughts are that such symptom diaries are only useful to some people and probably only useful for those ill enough to benefit from them, but not so ill as to be unable to afford the energy costs involved in keeping them up.

 

I heard a joke that police make people do noise diaries (for neighbourhood noise disputes) because it means the complainant is busy keeping records and not bothering the police. Possible parallel here..

 

Sometimes I feel it would really help to have a thread where I could share my crib notes for a coming appointment and have willing volunteers comment with ideas or as devils advocate, to help me feel ready to the conversation as best i can and reduce the anxiety (which I almost always get now about medical appointments). I

If strongly feel that the way one conversation goes can make things go on way or another quickly.

Does that happen anywhere else or is it covered within the thematic threads anyway?

 

Thanks I may do so one day!