Googling your illness
Driving to work this week, I have been catching up on my podcasts. Every day I listen to the Archers episode from the day before, and also catch up on Desert Island Discs, The Life Scientific, Money Box, Danny Baker, The Eddie Mair podcast and iPM (also Eddie Mair - he's really excellent). Matt at work also got me into Serial, and following the case of Adnan Syed. A fascinating legal case. These keep me entertained on my 2-3 hours of commuting every day.
A recent iPM episode is Should I Research my Illness Online (broadcast 25 Nov 2017, just over 12 minutes long), so as a librarian with an illness it made interesting listening. The case discussed is of esophageal cancer, but the points made by the consultant and nurse are relevant to any illness, and particularly any cancer.
So, lots of people say not to Google your illness - including the doctor in the case on the podcast - and the patient listened and decided to "trust this man, because there isn't anything else I can do." rather than do his own research. For me, I am not dissimilar. I very much trust the doctors and nurses, but the librarian in me also wants to check the facts they've given me, and in the podcast they acknowledge that refined searching for answers to specific questions is a good thing. They like to be challenged and ensure that their relationship with the patient is one with an empowered partnership. I think one of the reasons I have always like being a patient at Nevill Hall, is that the staff there don't mince their words of dumb down the news. They make a pretty quick judgment call on my ability to deal with a process information and give it to me straight.
The first time I was diagnosed, the box of tissues was nudged in my direction. In response, I got my notepad and diary out, and started making plans. I know friends - also librarians, as it happens - who have done the same. Yes, we cry. Yes, we're scared. But as the podcast points out, anxiety is caused and worsened by not knowing what the future might hold. Some people need to know a little at a time. Others want to be a few steps ahead. Greg is the former - I'm the latter. But having said that, I also know that I have to deal with each step at a time, and things can't be rushed. I like to know what the options might be, but I recognise they are options, not confirmed paths.
On the podcast, I particularly like the bit where the consultant and the nurse disagree about the reasons for the 'Prepare for Surgery' programme. He says reduced anxiety has a key role in outcomes from surgery. She says anxiety can impact on someone's ability to normalise and get on with their life. I suspect they are both right.
Having good access to information, and using it properly can help with all of that.
So, yes, I do Google my illness. I access the academic sources that I have the privilege of being able to get to, and am glad that I have the skills to know what kinds of sources are worth paying attention to. I'm not a scientist, so I avoid the heavy research studies and look for the review articles. I get the simple summaries from Macmillan, Cancer Research, Breast Cancer Care, Breast Cancer UK etc. I ask specific questions, and look up specific facts.
And like the patient in the podcast, I avoid the discussion boards on secondary cancer, on living with cancer. The things that might bring up the horror and the what ifs. If I need them, I'll go there, but until then I'm looking for the positive stories, the facts, the process. I'm not very good at sympathy at the best of times, so avoid posts seeking it. I hope that my blog sheds some light and positivity into a world where it can all feel very dark, and maybe what the nurse says about finding too much negativity online can be reduced a little by this blog.
A recent iPM episode is Should I Research my Illness Online (broadcast 25 Nov 2017, just over 12 minutes long), so as a librarian with an illness it made interesting listening. The case discussed is of esophageal cancer, but the points made by the consultant and nurse are relevant to any illness, and particularly any cancer.
So, lots of people say not to Google your illness - including the doctor in the case on the podcast - and the patient listened and decided to "trust this man, because there isn't anything else I can do." rather than do his own research. For me, I am not dissimilar. I very much trust the doctors and nurses, but the librarian in me also wants to check the facts they've given me, and in the podcast they acknowledge that refined searching for answers to specific questions is a good thing. They like to be challenged and ensure that their relationship with the patient is one with an empowered partnership. I think one of the reasons I have always like being a patient at Nevill Hall, is that the staff there don't mince their words of dumb down the news. They make a pretty quick judgment call on my ability to deal with a process information and give it to me straight.
The first time I was diagnosed, the box of tissues was nudged in my direction. In response, I got my notepad and diary out, and started making plans. I know friends - also librarians, as it happens - who have done the same. Yes, we cry. Yes, we're scared. But as the podcast points out, anxiety is caused and worsened by not knowing what the future might hold. Some people need to know a little at a time. Others want to be a few steps ahead. Greg is the former - I'm the latter. But having said that, I also know that I have to deal with each step at a time, and things can't be rushed. I like to know what the options might be, but I recognise they are options, not confirmed paths.
On the podcast, I particularly like the bit where the consultant and the nurse disagree about the reasons for the 'Prepare for Surgery' programme. He says reduced anxiety has a key role in outcomes from surgery. She says anxiety can impact on someone's ability to normalise and get on with their life. I suspect they are both right.
Having good access to information, and using it properly can help with all of that.
So, yes, I do Google my illness. I access the academic sources that I have the privilege of being able to get to, and am glad that I have the skills to know what kinds of sources are worth paying attention to. I'm not a scientist, so I avoid the heavy research studies and look for the review articles. I get the simple summaries from Macmillan, Cancer Research, Breast Cancer Care, Breast Cancer UK etc. I ask specific questions, and look up specific facts.
And like the patient in the podcast, I avoid the discussion boards on secondary cancer, on living with cancer. The things that might bring up the horror and the what ifs. If I need them, I'll go there, but until then I'm looking for the positive stories, the facts, the process. I'm not very good at sympathy at the best of times, so avoid posts seeking it. I hope that my blog sheds some light and positivity into a world where it can all feel very dark, and maybe what the nurse says about finding too much negativity online can be reduced a little by this blog.
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