Just read this via Lupus UK Facebook feed:
dailymail.co.uk/health/arti...
Feeling such gut wrenching anger. The person who stole my sense of security as a child appears to be culpable as to my wretched physical health. I've never felt like this before. 😡
In my view this is a BS study. It is one study asking people to look back into their pasts. I think it was a flu I had a few weeks before I got sick. Recently, I put an Ancesty DNA test through a medical program and found I had more genes for lupus than I knew existed. It seems to me everyone has bad experiences. This seems look a fashion to me -- blame illness on people's psyche--especially if it is much more common in women.
I'm in two minds about this. My sister in law is presently in the middle of a traumatic break up and is going round and round in ever decreasing circles without seeing the bigger picture or taking on board any advice that her family or friends offer her. This has been going on for years.
Recently she went to a Harley Street clinics with a psychiatrist friend, who has been counselling her and saying she has PTSD from childhood neglect. At some huge financial cost she had her brain scanned and they told her and has significant damage to some areas that have disabled her ability to empathise. Now they are giving her ECT and saying they think they can heal her damaged brain - cause cycle accidents, car crashes all when younger.
My feeling is that she would do better to consult a lawyer about her psychopathic husband but she is increasingly determined that paying for ECT will help.
For me personally trauma from sudden deaths of both parents, preceded many years earlier by the loss of both grandparents in a car crash on my 11th birthday could account for when certain autoimmune symptoms made themselves felt. These events certainly triggered severe immune responses in me. Nor has having to fight so hard to be believed by doctors been easy to bear - and could well have caused PTSD for me and many others here I believe
But I have been pretty much able to trace the event that has caused my autoimmunity and it wasn't any kind of emotional shock - but rather a physical one - and isn't something I would apportion blame over.
I don't know if it's a different story for those who have suffered emotional and physical abuse - but I just feel many have who don't go on to develop autoimmune diseases as a consequence. And many with AI diseases have had perfectly functional childhoods.
I think I agree with Ann that there's a danger that people with AI diseases feel ashamed somehow that they have one - and bad memories surface then which of course only make the disease more active. This Daily Mail article smells to me of trouble - but then I'm no fan of this paper anyway.
God. ECT causes brain damage !!!!! Tell her to stop.
Ach can't tell her anything Freckle - her best friend who is administering it is a consultant psychiatrist!
Sounds like her best friend is the one without empathy. Talk about projection. My love of Doctors is equaled only by manipulative - self serving psychiatric professionals. Its medically unethical for 'friends' to be treating friends. For good reason !
Whoa.
She needs a neurologist for fecks sake.
Hmm yes. I do think stress (and clearly PTSD) can be a contributing factor, but it is almost impossible to be certain about causation. For me it could have been that (traumatic birth of my daughter leading to PTSD, bullying at work) but equally could have been a virus, or persistent insomnia, or pollution, or stress and poor diet or my the concussion I had, two months after I got symptoms. Or all of those things.
But reflecting on those things can re-traumatise, and with PTSD dwelling on the event doesn't help you at all. Perhaps as the docs say it's better to focus on present realities.
When I had PTSD, I used self-administered cognitive behavioural therapy to piece my life back together again. I'm kind of doing the same thing now...inching my way through tasks, baby steps forward (with many, many lapses), recognising that whoever you are now as a person is a way forward - perhaps not the one you imagined but it is possible to live.
It's always useful to read the original research paper rather than newspaper versions (especially the Daily Fail!)
I read one of the antecedent papers, which reviewed the incidence of a variety of auto-immune disorders in US military personnel (male and female) returning from combat situations. The results are clear - both male and female veterans with PTSD were twice as likely to have lupus as matched individuals without PTSD. Here dx.doi.org/10.1016/j.biopsy...
It is also clear that none of the authors of these papers is saying that AI disorders are *always* caused by trauma or stress. It is simply that trauma/stress significantly increases the risk of developing them.
Having worked in a mental health team assessing people for mental health problems, I am quite certain that people diagnosed with PTSD have very severe problems, and that the traumas they describe go far beyond the everyday incidents of general life. The people I saw hadn't just been teased at school or tripped on a paving stone, they had survived years of sexual abuse in childhood, watched friends and comrades being literally cut to pieces in front of them, been forced to watch a spouse or child being tortured to death...things beyond what anybody could bear without breaking. One of the cruelest things was that so many spent many years undiagnosed, having their symptoms minimised by people unaware of the true extent of their previous suffering. As we should all know, just because someone appears to be coping, and to manage a smile when we see them, does not necessarily mean that there is basically nothing wrong and that they just need to "man up" . I am delighted that PTSD is being increasingly recognised and diagnosed.
Moreover, we have increasing evidence for mechanisms which explain how emotional stresses can feed into physical changes (Dan Sapolosky's latest book, "Behave", explains the science very well). Even if we don't have a full understanding yet, I have no doubt at all that severe chronic stress can produce significant changes to immune function. But it isn't the only explanation.x
This is an interesting post Mike. I think you are very right to say that recognition is a good thing. But I feel there is also a danger that over diagnosis by those with an interest in selling self help publications or bogus/potentially dangerous treatments becomes too prevalent. Wounds caused by major trauma don't heal easily, if ever. These will need to be approached with great care and sensitivity and not suppressed or ignored.
But being over self analytical about relatively minor trauma such as feeling rather neglected or having a fractious relationship with a parent or sibling, may be best left in the past I feel.
But unlike you I have no professional qualifications in this area, although I was a child carer for my mentally unbalanced mother and I've got a very close friend who has suffered terrible trauma and chose me, for some reason, to be her main confidant. Neither went on to develop autoimmunity however - but my friend was unable to open her jaw for a few months from severe TMD caused by this traumatic event and its wider consequences.
So as with many things in my life, I've researched and followed my instincts for much of my life where mental health is concerned. So my comment about some things being best left in the past is just an observation - i could well be wrong.
I read this and thought about it too. I do think extreme stress and PTSD could be part of AI. But, my Dr also said that a bad illness as a child could be part of it too. She seems to think that there is definitely a trigger. I couldn't think of anything "medical" that could of triggered my AI.
Interesting read, thank you but there's nothing very new in it
I suffered a 3rd degree scald when I was 8, left with a young teenage brother and a slightly younger sister, parents had gone to work. Badly traumatised I was eventually taken to hospital where a nurse proceeded to use tweezers to burst the blisters with my mother, who'd been called out from work, saying shouldnt you be giving her something for the pain...the doc arrived and he gave something to deal with pain. I was out of it then, whether a black out from the pain or meds I dont know as I've no idea what that doctor gave me
My next memory is being in bed on the ward with staff wanting to give an antibiotic and me screaming the place down. My mother was getting angry telling me not to be so silly about an injection and I clearly remember him telling her that my distress was understandable, which shut her up, and that what had happened might impact on my immune system
The first rheumatologist I saw in 2005 saw the scar and I asked her if what happened when I was 8 had started the immune problems off. She said it was possible but too long ago to be sure.... I've always thought trauma and genes are the reasons I have lupus today. I'm 70 now...
I Gina,
I was pretty 'badly' abused as a child and I have complex - cumulative PTSD and SLE Lupus. I went through the stage that you're going though now. Getting VERY angry at my family - not only the abuse, but for the illness.
I know its a popular belief among psychologists etc. that autoimmune conditions are caused by trauma. This thinking is leaking into the neurology field now.
What is known is that you have to have a certain genetic make up to be prone to SLE. They have also recently discovered a messenger protein that can mess with the DNA and trigger Lupus. What triggers this protien is currently unknown.
There are a scwillion studies hovering around this trauma/illness area - but at the moment they are all just unproven theories. So many scientific studies -when you look at them closely - are just ideas. There are plenty of Lupus sufferers who had verygood childhoods and had never had a problem in their lives until they developed Lupus.
I think its a lot more complicated than the article states. Researches tend to dwell only in their chosen field and don't really think broadly enough about complicated illness like SLE.
He spoke of cortisol levels going up and causing trouble. We take cortisol in pill form. In some drug sensitive people - this can mess around with our anxiety levels. This shows his study is a bit invalid.
Anxiety and trauma doesn't help with any medical condition.
I did get some structured help with my cPTSD from various psychologists - some of them good - some of them pretty bloody terrifying. But eventually - with enough information I was able to - I think they call it 'assimilate' the trauma into my everyday life and live with it without it crippling me. Its a bit like what my Grandparents generation said. You put it in a box - and you don't think about it. You know the box its there - you don't like the box - but you don't have to open it all the time.
I know this is easier said than done, especially when your living with the long term psychological effects of trauma. Unfortunately - that's where - a skilled - gentle and trusted shink comes in handy. Its not something you can deal with by yourself.
But you really have to be very discerning when looking for one. A lot of them aren't nice people themselves. If any of them come at you wanting to engage in an 'aggressive - in your face' kind of therapy - walk away. If you feel re-abused after seeing one - walk away. Trust your instincts. I've engaged with 5 psychologists over a lifetime and a couple of psychiatrists. (To be honest - in my experience - you need to be a bit more wary of some Psychiatrists)
ps. Dont let your humanity be limited by a DSM label. Ignore them. The DSM manual is only meant to be a vague guide - and that too is not based on good science.
I do hits patches of some pretty awful rage myself - but they pass now.
Don't let your family ruin your adult life too.
I have read that many who survived Ebola have gone on to develop autoimmunity too. For me I'm sure it was the sudden deaths of both parents followed by severe food poisoning and a bout of swine flu that were the catalyst - but definitely not the cause because I've had a lifetime of autoimmunity.
Hello Gina,
Just a 'MAJOR' p.s. Please don't ignore this advice.
If you do - or are seeing a psychologist / etc. You must be 100% sure that its 100% confidential and NEVER shared with Doctors who are treating you for Lupus. And I mean never.
I've had well meaning psychologists write letters regarding some - sometimes accurate and sometimes way off beam assumptions they'd made about me to GPs. These assumptions have often been misinterpreted by Doctors and have contributed to some delays in timely medical care when I flare.
I wont say psychologist letters were the sole reason for some of the delays - My disease is has been pretty aggressive and complicated. But psychological assumptions certainly didn't help with some Doctors. Medico's aren't always high in the psychological insight department.
Also - just be very cautious about sharing any psychological info with your Doctors verbally . Stick only to the Lupus. If you appear ground down and anxious to them - if your taking prednisolone - use this as an excuse - use any mundane thing to explain it.
Don't mention the family induced PTSD because I've found Doctors are very fond of playing the amateur psychologist. They can really go to town with this one and assume all kinds of moronic things about you.
Just keep re stating - you're there because you have Lupus - I'll will deal with the other stuff - don't worry.
Always keep it impersonal.
Thanks Freckle1000. I appreciate the amount of time and thought - and care - which has gone into your posts.
Correlation and causation are different things. To me the research done screams "oh, well, we still don't know much about autoimmune disorders but we want the world to think we are doing something'.
An overload of negative emotions can trigger flares? yes, sometimes ... please dear, don't let yourself to get dragged by bad feelings or thoughts. You deserve better.
Sam
PTSD 
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