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?!

I have graves disease and flare ups are often caused by stress. Prolonged stress increases cortisol and weakens the immune systems ability to regulate itself.

Adverse childhood experiences are linked with several negative health outcomes in adulthood including autoimmunity. I searched for ‘childhood adversity and autoimmunity’ and found lots of articles including this https://pmc.ncbi.nlm.nih.gov/articles/PMC3318917/

I got MS 6 months after losing a pregnancy. I was so so devastated and tearful about the pregnancy. Struggled to sleep and then I got severe MS.

Several autoimmune diseases here as well as Ank Spond and especially Fibromyalgia. The latter being a firm belief my Rheumy thinking is a knock-on effect due to my Complex-PTSD of 50+ years of financial, emotional and physiological and physical abuse.

I absolutely cannot argue against the link between autoimmune conditions and trauma.

I have rheumatoid arthritis which lay dormant until a sustained period of bullying. And looking back I can see periods of stress where it flared. It’s a thing.

I have several auto immune diseases , very little trauma in my life aside from the usual deaths of parents / pets and totally unstressed / never anxious / no mental health problems so it’s certainly not the cause of mine .

And I have lots of trauma and no autoimmune conditions. I think this is a case of correlation not necessarily causality.

I have MS, too and my mum maintains it was caused as a result of my abusive relationship. I’m inclined to agree.

I have an autoimmune disease, and my rheumatologist explicitly said he believes a period of immense stress/traumatic event in my teenage years was the trigger for its onset. This is not some sort of weird quack doctor, it’s my NHS rheumatologist with about 50 years experience.

I think it's quite well studied though. Lots of things lie dormant until triggered. By an illness, virus or stress/trauma.even if there is a genetic element.

Agree though. The social media side is too simplistic.

I was told hormone shifts (such as after pregnancy, starting menopause) were a big trigger for autoimmune conditions starting up when I was diagnosed, plus inheritance. No one has ever mentioned trauma as a possible cause to me, just stress as a possible trigger for flare ups

I have Lupus and Fibromyalgia, I was also the victim of DV in my first marriage abd cheating in my 2nd. I also lost two children shortly after birth. It relates to that trauma in my 20s. The Lupus wasnt dianoised till my 40s but the symptoms were there a long time before.

They’re still researching why the gene responsible is switched on - I understand it can be illness, hormones and more recently trauma has flagged up. Stress is also a common reason for flare up of most of these conditions. And of course stress can be environmental stress rather than the mental one we think about - pollution, noise, poor food.

I got psoriasis first in an appalling marriage though also had had minimal sleep. I was diagnosed coeliac at 52, so maybe hormones but also had had trauma again, finally diagnosed PA after caring for my parents through EOL.

A family member was certainly recently told that their alopecia was trauma related.

I do believe trauma can be one of a few triggers - but where that takes us in management of it all I’m not sure - obviously it gives TikTok content creators work ha - but maybe spreading general awareness of auto immune disorders is no bad thing - I still have to explain psoriasis and coeliac quite a lot.

I agree, OP. I have an auto-immune condition and when I tell people about it they seem to want to rush towards the idea of finding a link with stress. For years I have wondered if this might be due to a popular confusion between the term 'stress' as used in the general population and 'stress' as used by doctors, who I imagine generally refer to it in connection with specific bodily processes, such as fighting an infection (which clearly are implicated in auto-immune attacks) , rather than wider life stresses.

The other thing that might explain it is that auto-immune diseases are often so frustratingly and agonisingly underexplained. The typical relapse-and-remission pattern, often with invisible triggers leaves people without any anchor or sense of control, so it is really, really tempting to latch on to any plausible explanation , and to see patterns where none exist.

Trama and stress are very common, auto-immune episodes are very common, so there are obviously going to be a load of cases where they correlate in a manner that can suggest causation to someone desperate for some understanding of a distressing problem.

And another thing is bloody social media. There is so so much health misinformation there. Content creators leap onto any idea that is remotely catchy and push it hard. It's a real problem

All of this is true, plus there seems to be a general undermining of support for people with long term illnesses since the government has started whipping up resentment and coming for PIP claimants as if they are responsible for ruining the economy.

(I’ve never claimed PIP personally but a lot of people with autoimmune conditions do need to, which is totally understandable and what that specific safety net was put in place for).

When you pause to view those videos, TikTok gives you more of them. Don't pause, ignore, swipe away, as fast as possible.

Just to add, I don't doubt that there is some connection with stressful life events in relation to some episodes of some diseases in some people. AI conditions are typically multi-factorial and a lot of ducks have to be lined up to trigger illness. What's false about the stress narrative is that it offers a falsely simple explanation with stress at the centre. A really complex medical picture is displaced by something comfortingly unnuanced.

False explanations are almost as comforting, and almost as pervasively shoved at us, as false cures. When I look at the charlatan, snake oil remedies being flogged for my auto-immune condition it is testimony to the level of distress that it causes (even tho it is less serious than RA), and to people's willingness to latch on to absolutely anything that offers some illusion of control

The way I understand it is that people who develop conditions such as RA for example will, somewhere in their family, have a link to an autoimmune condition. So whilst it's not hereditary as such, there will be a tendency to develop RA and something will trigger it, like infection, or stress. So for people with traumatic childhoods etc, I guess the resulting stress could trigger them developing it because they had that tendency anyway. If that makes sense!

This is true of TikTok - I looked at some videos that are the other side of what I get activist on - I now get embarrassing and annoying notifications when they post new stuff, despite not following them. Then again I’m a bit of a Luddite with TikTok and will have to be looking at how to stop these.

Its silliness. My chronic eczema is autoimmune I highly doubt I’d been through trauma to cause it at a few days old!

Autoimmune is just that.. the immune systems ability to detect self and non self is faulty. It’s genetic usually.

I have RA and pregnancy/birth triggered it which I suppose was a trauma on the body, and I had a very difficult pregnancy as I also have PoTS and hEDS which I didn’t know until I got pregnant and started suffering immensely so perhaps a trauma of sorts.

I don’t find it helpful though, but each to their own. I prefer a rheumatologist who listens to me, medicates me correctly and then trying lifestyle things to try to live as well as I can.

I know 9 people with rheumatoid arthritis! Also a few others with fibromyalgia, reactive arthritis, ulcerative colitis, Crohn's, ankylosing spondylitis, MS, primary billiary cholangitis, gout, graves, hashimotos, CIDP. I'd say 80% of them smoke or were heavy smokers. I have a bunch of autoimmune conditions too. Correlation? Maybe. Trauma? A fair proportion of them, myself included have had trauma. I think there's a genetic predisposition that loads the gun then lifestyle , viruses/bacterial infections and trauma pulls the trigger.

The majority of RA sufferers are Female. As I understand it most of them start to exhibit symptoms around the menopause or at other times of hormonal upheaval such as pregnancy. I would say very few people get through life without suffering some sort of trauma so that would be a very convenient 'explanation' whereas the gender and hormonal triggers are much more specific.

I was diagnosed coeliac around 53 - there was a whole raft of overweight middle aged ladies being diagnosed and at the initial group intro to coeliac thing this was commented on by one of the nurses and we were told it was going to be part of some research. I’ve not seen anything on it since particularly though, but this was just pre covid if that makes a difference- it certainly did to my ‘annual review’ lol.

So this may well indicate hormones I guess. I also wonder if my body had just had enough of the heavily processed rubbish I have ended up eating over the decades - as in normal bread, pasta etc - maybe something in that upset my body but my body could only recognise gluten as a potential cause, not the chemical or whatever - I realise that is a little off beat. I had also had some trauma.

Maybe there’s correlation with some stuff, or maybe combinations of things trigger the switch on, or Maybe one day a specific cause will be found - certainly and sadly though once you have one then they seem to be collectibles!

They may be confusing the fact that stress can cause flare ups (a well known fact), but potentially also “switch on” dormant disease. I have two autoimmune diseases, Uveitis and Lichen sclerosis, I definitely get flare ups when I’m tired or stressed. But also with the Uveitis I test positive for a gene associated with it.