By Dr Irwin Lim, Rheumatologist
A few months ago, my colleague Roberto Russo, wrote a post on lupus. The post was an attempt to inform that lupus could present with arthritis, and that in many, the disease could be relatively mild and well managed.
A torrent of comments, some highly inflammatory, ensued (read it here). We were taken aback and Rob hasn't written another post since.
This event made me acutely aware of the negativity that does exist on social media.
Is makes me wonder how this negativity impacts on patients who are searching for health information?
It can't be a good thing.
I am very grateful for Jeanette's feedback. She regularly comments on this blog and her words resonate:
"When I was diagnosed, and even more so when my disease forced me into medical retirement well before I was ready, all I could find in social media was blog after blog, fb page after fb page run by patients and the overwhelming tone was so negative. Once I was at home every day and feeling like a caged lion I began trolling these pages and sites every day and the negativity started to rub off on me and although it did not affect my physical health, emotionally it started to really drag me down."
I do encourage my patients, after I break a diagnosis to them, to learn as much as they can. This is typically based around the internet. I assume you do search your health questions. I assume most times you just read. Sometimes, the braver will venture to comment.
"Even worse, I posted on some of these sites and was attacked! How could I possibly suggest that some people actually respond to biologics…can't I read…look at all the people here who do not (even though they are talking about running in half marathons, travelling the world and working full time….all things I could only dream about) Not to be knocked down, I suggested that the people who were responding to the current treatments maybe would not be in need of the blogs and online support groups on offer because they were out there working and leading relatively normal lives….SMACK! How dare I suggest this….."
That hurts. And then..
"I was accused of being a liar when I suggested I had been on 5 bios (6 now but it was 5 at the time) in a said period of time…it was just not possible and I must be making it up…..It was about then that I decided to abandon these such blogs because all they did was add to my woe. Of course there was some good…I met a few others who thought similarly to me and we continue to communicate and support each other…."
I am very grateful to Jeanette for sharing her experience. I'm sure her open, informed stance can help educate others. It helps me.
By the way, I'm not suggesting that you view your health issues through rose-coloured glasses. Reality must be faced.
Personally, I lean more towards being a half glass empty type of guy but I can't help but think that when faced with a chronic disease such as arthritis, a positive spin is much healthier than a persistently negative outlook.
If you agree, please spread the word. It's important more positive messages find their way to the world of health care social media. If you don't agree, I'd be really interested to try to understand why.Dr Irwin Lim is a rheumatologist and a director of BJC Health. You should follow him on twitter here. Arthritis requires an integrated approach. We call this, Connected Care. Contact us.