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LUPUS UK
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Who believes that it was your mental health which led to the development of Lupus?

I think it is too much of a coincidence that my Lupus symptoms and diagnosis came so soon after a bout of severe circumstantial anxiety, stress and depression.

Being genetically predisposed to autoimmune conditions including Lupus, perhaps I was always going to develop it somehow (who knows!) but I feel so sure that mine was initially caused by this and that I may not, or at least not yet, have developed the condition otherwise.

At the time, I knew I was damaging the rest of my body and I feel it was as if it had just had enough and a switch flicked. I remember thinking at the time that I will get physically ill in some form if my situation and environment doesn't change and if my mental health continues to deteriorate.

I have had Body Dysmorphic Disorder since I was 12 (am much better now) so I was used to living in a constant daily state of anxiety but it is these few months of what I would class a circumstantial mental breakdown (I don't think this is the PC word for it anymore) after holding such emotional stress inside for too long which I am sure was the trigger.

Of course we are all different and poor mental health, circumstantial or not, can trigger all sorts of other illnesses (or none!) but I'd be very interested to know specifically if anyone else has similar thoughts in terms of their Lupus and autoimmunity. x

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Possibly. I had years of a stressful job and bullying managers, and lots of other stuff besides. I don't know though, could have been a virus or a combo of things. Frustrating not to know, isn't it?

I tend to go by my triggers really, in trying to work out what caused it. For me doing too much and emotional stress.

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Yes, I'd say that most diseases result from a combination of our biological predisposition and the environment that we experience. That includes the social environment - for instance, it's well known that emotional abuse in childhood leads to a higher likelihood of a number of "physical" illnesses, and that emotional stress causes increases in cortisol levels and changes in both neuronal configuration and immune system function.

I guess not many of us have clear-cut evidence of how our AI disease came to develop, but maybe we can take a good guess.

In my case, I suspect that a serious accident in 2013 released a flood of trauma-related bio-molecules and set up a long term inflammatory state. That may have switched on some normally down-regulated inflammatory and auto-immune systems. 18 months after the accident, I returned to a highly stressful work situation where, as the most experienced in the team, I was handed a caseload comprised of the children deemed at highest risk of suicide and/or abuse. "Welcome back, whisperit!" Things in my personal life were at crisis point too. It all climaxed when I arranged to have a week off and had to make all sorts of arrangements to cover my absence. The first day of my holiday was spent throwing up, shaking with anxiety.

I developed symptoms of what turned out to be AI interstitial lung disease about 6 weeks later.

So yeah. Our bodies and our minds are inseparable. We need to take care of both x

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I couldn’t agree more. It’s like my body has just said ‘enough is an enough’. History of depression, highly stressful job, very traumatic events and a touch of needing perfection in everything I do.

I’d pushed on trying to have it all and came to a grinding halt. Weirdly enough my mental health is good at the moment.

My sister who has Lupus had glandular fever and a cycling accident. She was never the same after the latter.

X

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I agree. My recent bad medical reports are possibly due to unwanted stress that ive been taking for the past few months. I believe so.

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I think my autoimmunity was triggered by my mum unintentionally starving me as a newborn. She thought she was breast feeding me, her first born. But her mother insisted that she only feed me four hourly - rather than on demand. My dad was ill in hospital with mumps at the time so she was staying with my grandmother.

When I was about 3 weeks old a family friend who was a retired nurse came to visit and pronounced that I was on the brink of death for malnutrition. They bulk fed me on cow’s milk with semolina. I think this triggered a fight or flight response in me - as well as a lifetime of allergies and immune problems. I developed severe eczema and alopecia, Cheilitis, Sjögren’s and Hashimoto’s. The trigger for RA-type symptoms then came when my parents both dropped dead from heart failure within a few years of each other, both aged 73. This same year of my mother’s death I suffered from Swine Flu and severe food poisoning and I was premenopausal and had vitamin D deficiency.

So you could say my mental health was a trigger. And I was certainly always of an anxious disposition. But life events have been the trigger for me rather than primary mental health problems per se. I feel very wary of the idea that autoimmunity is caused by poor mental health because this is what my parents always told me and then I finally discovered why they had projected their own guilt when I was in my early 40s.

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What a time you've had. Thank you for your reply x

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The babycare "experts" of the 50s and 60s have a lot to answer for! My Mum was prevented from breastfeeding altogether by her midwives, who told her "bottle is best". Once home, Mum was very keen to do everything by the book - unfortunately, the book was Truby King's "Baby Care Methods". This meant "discipline and detachment" - no more than 10 minutes of cuddling per day, ignoring crying, being left out in my pram on the balcony of our council flat every afternoon and left, and insisting that I should play on my own, rather than with my Mum and Dad.

It's like a recipe for sociopathy. Luckily, a baby sister arrived when I was 2, and Mum realised that she couldn't do the same to a baby girl - I was free! In retrospect, I think it is no coincidence that I ended up working with children with severe attachment difficulties....x

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Heck we have a lot to curse these self proclaimed experts for eh!

I got loads of cuddles fortunately as my mum was compensating for her own bully and tyrant of a mother. My dad read a lot to me as my younger sisters were both born profoundly deaf and he has no idea how to communicate with them.

One sister was born 2 days prior to my first birthday. My mum almost died after she was born and required 2 blood transfusions. So I was left to spend my first birthday in the capable hands of a teenage eau pair whom my mum was treating for Scurvy!

I would say my parents were very doting but carried a lot of historical smelly baggage between them. I was assessed by a child psychiatrist age 9 when I lost all my hair. He said I was of very wise and mentally strong disposition and just very unlucky with my physical health. Shortly after that my grandparents died in a car crash and my mum had her third breakdown so I was a child carer.

I guess this is why I am so resistant now to people saying autoimmunity is all a product of the badly behaved mind. In my case circumstance and genes have played a major part rather than abuse, or deliberate neglect or mental health problems.

Triggers can vary enormously. For instance they say Ebola survivors are now showing autoimmunity galore. I think you or someone posted recently about the role viral infections can play in our diseases? X

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Yes I completely agree-I am also resistant to people saying it is always only a product of the mind. For some people, perhaps it is although I don't doubt it's often a mix of circumstances, environment and genetics among others (Lupus and RA runs in my family-2nd/3rd cousins), at least a mix in my case anyway. Or perhaps it's just one coincidence!

I just think that it was my circumstantial poor mental health which happened to trigger mine, being likely genetically predisposed to it already, compared to all those who have suffered FAR more psychologically or physically than me but who happen to not be as genetically predisposed.

Who knows?! It's interesting to hear if others also happen to think it was a trigger for theirs -especially having had specialists and GPs doubt that it COULD have triggered mine rather than count it as a possibility or a contributing factor x

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I was diagnosed with lupus shortly after my mum passed away but I did also have a very hard childhood aswell so I think all of that happening is what triggered me to have lupus x

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Thanks, haven't heard of this. What brand do you recommend? x

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Could you give us some more information please I haven’t heard of this

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I am convinced mine was triggered as I was working ridiculous hours , working as a nurse for the nhs I had set up my own business teaching up and down the country and was studying for my masters - aw and running a house and looking after 2 teenagers with a husband who didn’t see the immense stress I knew I was under ! I knew I was going to get I’ll but didn’t know how to stop it , everything was a priority so I gave everything my all and myself I neglected !i did have a autoimmune illness so was maybe going to develop it in the future but I believe I brought it on early 😢

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I think you cannot separate the two. I believe that although the condition is there, whether the trigger is physical ie a virus or mental in the form of stress that trigger is needed. I worked long hours as a nurse and many of them with vulnerable children. I feel the emotional stress contributed to my illness.

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We have to remember we are whole people and what affects us on one level does so on another, too. Stress can cause all sorts of illness, not just lupus.

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I agree johare.

I think my condition initially began with an already ongoing health problem that took many years to be diagnosed. I became frustrated, annoyed and angry for the disbelief shown and to be repeatedly told I was a completely healthy person and most of this was a result of an overactive, anxious mind! Throw into the mix a decade of caring for both parents - one with Parkinson's with Lewy bodies and one with Vascular Dementia. Add to that a controlling sister who stipulated that - "everyone (choose where we live) had a responsibility to do their bit" Not too bad if you are in walking distance. As for myself, I was an hours drive away! Not a big deal one could say, however, sleeping overnight during the week, and then to get up, prepare everything for my parents forthcoming day and await for the visiting carer ( I use the term 'carer' very loosely!) to arrive - then drive the hour back home and get ready for work (full time) does eventually takes its toll on mind and body. It was no picnic but I loved both my parents dearly and did feel I was doing the right thing. However, when all the manic running around came to a grinding halt, it seems my body did too!

I wouldn't say I have mental health problems - I believe the emotional stress I had been holding in, while telling myself I could manage, finally caught up....x

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I was diagnosed after a very stressful event that I didn’t deal with. I beat myself up for it. That ran me down and gave a virus an opening. I think perfectionism has something to do with it. I don’t think it’s a coincidence I developed I disease in which my body is attacking itself.

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Thanks, this really resonates with me. I also think perfectionism has something to do it, in my case too. x

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