Autoimmune conditions and social media narriative

[chirpybird87]

I’m a tiktok and instagram user, and autoimmune content come up for me sometimes, probably due to having rheumatoid arthritis myself. I’m seeing more and more content saying things like “I have 5 friends with autoimmune conditions, and the one thing they have in common is that they’ve experienced trauma”. I’m getting really concerned that this type of narriative is developing, because conditions such as rheumatoid arthritis has nothing to do with childhood trauma and mental health illnesses…! Has anyone else seen these videos?!

We have so much auto immunity in our family its ridiculous. IMO the number one cause of autoimmunity is a genetic propensity hence why it runs in families.

Without the particular genetic make up you are unlikely to develop an autoimmune disease.

The triggers however are wide and varied, flu, pregnancy, hormone fluctuations, EB virus, cytomegalovirus, covid etc and I personally believe extreme stress although my dds consultant poo pooed this idea.

I think AI purely as a trauma response as peddled on social media sounds like utter nonsense.

There are a number of triggers. And trauma (which looks different for
different prople) seems to be a factor in quite a lot of autoimmune conditions. There is quite a lot of evidence to support this. Mine (and most sufferers I know) definitely flare under sustained stress which isnt really that different to other illnesses. Worth reading The Body Keeps the Score on this. And When The Body Says No.
On the plus front it probably protected our ancestors from all sorts of nasty infections like plague.

I am so interested in this - I had a flare up in my hands for months before I had a pulmonary embolism. They put me on apixaban to thin blood and it went away for several years. I had bloods laat week because my back has been burting and hands flaring up again and my von willbrand factor is sky high - clotting factor linked to thrombosis. This can't be a coincidence, can it? Dr has marked it as an actute reaction to stress or a virus and hasnt scheduled to talk about bloods at all. Am I crazy to think its connected?

I often get bad dreams. Something I have noticed over the years is that if I have a bad dream that relates specifically to the stressful event(s) that I experienced right before developing the autoimmune disease, I will find myself with a flare up by the end of the following day. I don’t flare up so much if it’s a bad dream about any other topic.

Hormonal shifts also definitely also trigger flare ups for me.

I developed coeliac disease shortly after a traumatic year. My marriage broke down and my father was diagnosed with lung cancer weeks later.
I have always thought it was the cause!

This has been known for some time, at least in women relating to childhood trauma. If you Google “childhood adversity risk factor autoimmune” you’ll get quite a bit of information

I’m sure stress and trauma doesn’t help any illness, but I know for me it was catching a virus which lead onto pneumonia was the trigger for my autoimmune disease.

I keep reading different theories but I have a lot of time for the theory that it is caused by the body not feeling safe for a long time and also I think neurodivergent are more likely to get it so a link there. My own came on after years of caring for a Mum with dementia, fighting against my own unease to be patient and there for her. I also have suffered with anxiety since a child.

I've seen quite a few of those videos too, and they do make me a bit uneasy. It feels like people are taking a few personal stories and turning them into a rule, when it's not that simple.
I have noticed that stress and trauma can affect how people feel or even trigger flare-ups for some but saying they're the reason someone developed an autoimmune condition seems like a big leap. I'd much rather trust what doctors and researchers say than what happens to be trending on social media.