Musings

I've had to delete Instagram and Facebook - I keep getting videos on my algorithm about my symptoms being similar to Hypermobile Ehlers Danlos Syndrome (hEDS) and it got me thinking....

Do we think TMS is more common since the inception of social media? Now we have far more access to knowledge of medical syndromes etc, does it make it more possible to be fearful of those....

What's most scary is a lot of these videos are 'doctors' (no way of verifying their credentials) explaining the syndrome, and people saying what's not normal, so things like 'if you can touch your chin to your chest' or the 'back of your head to your back' then you 'likely have EDS'. One video said 'shifting your weight from hip to hip' is a sign of EDS. I don't know about anyone else, and I can do all those things (and always have since before my chronic pain started)! None of it means I have a rare disease.

It was just rolling around in my head, that I wonder how much social contagion is caused by these dangerous videos. I understand the wanting to raise awareness of certain disabilities, but I wonder how much increase in TMS can be attributed to these videos. Just been pondering, instead of being scared.

The one that made me post this today was telling me that "Globus" can be attributed to EDS because the hyoid bone dislocates... this was apparently a physical therapist... It caught my attention because it spiked my fear, and I very quickly laughed at myself for that. Then I had another one, saying most people with hEDS get diagnosed after an injury or non recovery of surgery (but surely this doesn't actually make sense... why would you live a comfortable life and then suddenly develop a rare tissue connectivity disorder).

My algorithm is obviously designed to catch my attention on things, and it clearly feeds the fear - how scary is that!

Just pondering the mysteries of the modern world whilst coming off a dangerous feed, I'm fed up (literally! Ha!)

Doing well generally atm and hasn't caused a flare as I talked myself out of being scared, whoooo!

 

Congrats on keeping the flares at bay this is so awesome! In the medical world there is so much information it's impossible to get the same response from the same two western medical practitioners. One really interesting thing that many people overlook is the fact that illness and wild as it can be can be used as social contagion. Do you ever find yourself around someone who has a cold and then you start feeling those same symptoms they were experiencing though you are not sick at all? I believe to some extent this occurs in chronic illness communities especially ones with EDS / POTS / FIBRO. So many symptoms are being attributed to these chronic illnesses as the "source" but the mechanism in which they occur is never spoken about. At the root of every illness structural or nonstructural is the brain. The brain controls every function in the human body.