[nicky00]

Hi firstly

I really did not quite know how to title this thread.

There has been some debate recently with posts about how past events, can predispose a person, ie they are more likely to have health problems later in life if they suffered for example in childhood.

I'm aware that any blame about why I have lupus is rather futile. The horse has bolted after all.

Having said that I also think that its is good to at least look at ' stress' and how it affects the mind and body and if at all possible learn from what can press our emotional buttons and thus take steps to reduce as much stress as possible in the present time.

Take my lupus away and the job is done:rotfl:.

I'm not so sure that there is'nt always going to be a stigma about a disease being labelled ' emotional' as a root cause.
Why in fact should any one disease get more attention than any other as a having an historical emotional trigger.

I could go on about :

genetics

does tooth ache have emotional roots ( excuse the punn)

Is there more harm than good in 'labelling' a disease as emotional

Is it good know or is it pointless if you cant change it.


All I want to do is open up a debate, as I think its an important subject potentially.


Why do you think ?

Nicky

 

[KarenM]

Hi Nicky

An interesting debate indeed.

I had a very traumatic event back in the 80's, loss of sister in RTA, and my general mental health/physical health plummeted back then, and if I really sat and thought about those dark times, I dont think my physical health was ever the same, so SLE triggered by stress is something one could think about, lowering of immune system et al?

As for the labelling of a condition, for me, having a 'label' hower distasteful that label is, was very important, the stress leading up to my SLE/APS diagnosis was very frustrating, upsetting, and mentally having kept on being dismissed, and going from pillar to post, I found debilitating, which does not help stress levels at all.

I am one of these people who needs to know what I am dealing with, I am not happy to have any condition, as I am sure many of us here feel, but for me the not knowing was worse than knowing. I do however appreciate and understand that some people do not cope well with 'labels' because then it makes it real, and to some degree one has to deal with it then.

I dont think personally it matters what health 'label' one is given, anyone with a long term chronic illness, whether it be mild to severe, the main obstacle in the main I guess could be how each individual deals with it, or not, in some cases. Each and every person with any medical condition reacts differently I believe, some people can pull themselves up by the boot straps and outwardly seem to breeze through life, whilst others crash and burn.

Interestingly my rheumatologist said she feels letting a person know exactly what is happening is important in the main, but she said as a consultant, she usually has a good idea prior to diagnostic chat, who will react well or not, in which case she chooses how to present the facts. In my case my husband and I made it clear we wanted to be told it as it was, no gloss, so she had a good idea as to my abilities to be able to deal with the news.

Oh dear I am rambling, sorry, I am not good at words in writing I know what I mean, I just hope everyone can see what I have tried to say.

Great subject.

 

[Katharine]

Hi Nicky,
I'm extraordinarily tired right now so I might not answer this right...

It is an interesting debate but one I'm not sure I want to delve into too much. Some people look at past events in my life and say that I had a traumatic childhood. Maybe I did but for the most part I found it "interesting" rather than traumatic and feel I stronger for it and have many happy memories. So, does the trauma still matter or is it what I made of it that does?

I'm sure that didn't make sense but anyway... I'm sure all these things have an influence as "triggers" just as things like surgery, pregnancy, viruses and so on which are often mentioned.

On the whole, as I am the fourth generation in a direct female line to suffer from an auto-immune disease, I tend to think the genetics have quite a bit to do with it (for me).

Katharine

 

[nicky00]

Karen,
I am sorry to hear about your sister.
You wrote very well.

I did mean 'labelling' as in having an illness that is perceived as being something that ' one should try and deal with emotions' in order to cure.

Sorry I mentioned the C word. I remember somebody saying they did'nt like the idea of being judged with an illness as being curable if only one were to think differently etc ...if you get my general jist.

Labelling on the other hand is a good point indeed that I did not think to mention and yes I agree.... I like to be told very directly and its important to me up to a point of having a name as an explaination. Up to a point anyway.


Katherine.

I hardly had any sleep also when I wrote that and thought I may and will look back and think ' did I explain myself properly'.

I dont think that delving is necessarily a good thing either.

We are who we are by the sum of all parts and experiences, not just one sad/bad/mad story. Although having said that a thought popped up in my head.
NLP .......would say otherwise...hummm now Ive another thing to think about.


Why is it that when |Im tired I ramble and try to think too much.



Nicky

 

[Katharine]

No worries Nicky, I didn't misunderstand in that sense and I think we all think too much when we're tired. It's still an interesting thing to think about :hehe:

 

[Fairy]

Personally, I think as we learn more about the genetics of the immune response we'll find numerous different 'causes'. This isn't just one gene that we all carry - there'll be lots, all interacting. The different interactions probably relate to the different types of lupus (and other autoimmune problems). Maybe genes being 'turned on' more or less in relation to each other could cause problems. I would imagine the 'trauma response' could also be genetically regulated - the physical response to stress (which will vary between people) could potentially have a domino effect on other genes. The response to different medications is genetically regulated too (damn my rubbish bone marrow that can't cope with any kind of chemo!).

Basically I trying to say that the genetics of the immune system is an incredibly complicated picture, and will be more of an issue than whether or not we had a traumatic upbringing (for the record, I didn't.)

:hehe:

 

[nicky00]

Thanks Fairy

I agree .

If you have a genetic predisposition then its far too simplistic to label this disease in a purely emotional context like stress or ' a past life' being ' the cause'.

I think that would just burden those with chronic illnesses as being viewed by the naive 'as its all in the mind' and can be sorted 'if only'.

The interesting thing is there are those I know including myself who have in the past had episodes ( in hindsight) where the disease raised its head.

It was however a major later set (s) of events which bought up the disease in monster fashion big time.

Stress I guess not only makes things obviously harder but ..........

I wish you well with the health . Damm the genetics.

Nicky

 

[oesa]

Interesting thread - I'm trying to formulate what I want to say...

FIrst, I agree with everyone who's already posted.

When I was in uni I saw a therapist to try to help me sort out some things, and I do think that my "learning how to cope with a chronic illness" issues were intertwined with some other issues I was dealing with from a fairly stressful childhood. I did think that the two were connected causually for a while - i.e. the other stuff somehow "caused" the lupus.

Now, with a slew of siblings with other autoimmune conditions, I think genetics had more of an influence - maybe the stress triggered my first flare, but I think I would have ended up with it either way. As Fairy said, the immune system is incredibly complicated, and there are so many factors involved in its regulation that I don't think researchers will ever find a single factor that is "the" cause of an autoimmune disease like lupus.

And regardless of the actual triggering event (trauma, stress, a virus, E-B, too much sun, not enough rest, etc...), lupus is a diagnosable physical illness with very real symptoms, so from my perspective, the cause shouldn't matter. However, I suspect that if the wider world starting thinking that lupus was triggered by some kind of emotional "instability", we'd face a much harder battle in having our illnesses accepted and understood.

Just my 2 cents.

Lisa

 

[flamenco2]

Hi,
yes good debate here. Ive read allsorts and theories to lupus and other autoimmune diseases, traumas, etc etc genetics.
No idea about mine personally only I can 1000% say for definate I always put my first health problem and then this lupus only now being diagnosed, as a trauma for me.
I had a bad horse-riding accident in 1988 (age 25) Im 46 now !! years of them telling me I had a whiplash, drove me potty, kept telling hospital, gp etc etc the pain was WHOLE BODY not just my neck. no one seemed to have an answer. years of damn, creams, pills, potions, physiotherapy, paid private at osteopath, private at a chiropractor, aromatherapy massage, tried numerous "alternate therapies" it worried me COS IT WOULDNT GO AWAY ! thought what the **** have I got that no one can tell me what it is, and secondly any "hands on" treatment murdered me the pain, felt worse when anybody did anything to me. LOL then paid private (im in UK) by the way. later on in 1997 saw a top rheumy in greater manchester, told me i had FIBROMYALGIA, never given any drugs WHATSOEVER for it, til this day now still havent any MEDICATION AT ALL for the fibro (suffered constantly in pain and now still in pain 24/7 since 1988). I say to everyone "the day I fell off that damn horse was the last day in January 1988 I felt like normal" my life changed overnight since that day.
Now just got diagnosed may 2009 (all these years later) cos felt weird poorly and more and different pain in 2007/2008. now got lupus/arthritis, reynauds, arythema skin and fibromyalgia.
I always wonder if I also had all along or developed years after the fibro this lupus/overlap.
even my sister says "it makes you wonder" no-one can say. the burning on face etc only started 2-years ago, but the pain and mobility got worse long before that.
argh.......................... thats my tale, think mine was most definately trauma, but I also have hormone/brain/pituitary adenoma (non-cancerous) congenital from birth, and under endocrinologist. so maybe even that has things to do with the whole dam saga.
NOOOOOOOOOOOO it aint easy, for me, for you, for all of us.
My one wish was I never had the fall, was who I was before, how I felt at just 25 years old, had never got on the flamin horse, but how do I know that caused it, strange coincidence, apparently weve all have this/some gene in our bodies I was told and it lies dormant and something can TRIGGER IT OFF.
I will say mine was the bad accident, who knows.
all take care,
love hugs, keep in touch.
chat soon.
diane XX

 

[Lily]

Hi all,

I agree with those that have said this is a very complex picture and that our genetic predisposition plays a huge part in it. Then come all the other factors which need to be activated to spring the disease into action.

One part of this can indeed be stress but since the scientific work the last decade or so of stress be it physical or mental affecting the immune system more than we realise then it makes sense. They have already established a psycho/neuro/immune system connection for many diseases and it's a huge field of medical research these days. BUT I firmly believe it takes something in the genetic makeup to start with for this to come about. When you think about stress then you think of the adrenal glands......in my case they had a load to deal with along the way. My allergies have always been way over the top since birth.

I was another one with a fantastic childhood and no great stressors when this first reared it's head. That's of course unless you can count the hormones kicking in and causing me my first flare mid teens. I was lucky in that somehow that settled after a couple years in the main. After pregnancy and childbirth however things slowly reached a crescendo. The final straw was major surgery whilst undiagnosed and it was obvious to blind freddy that I had a big problem and was subsequentally diagnosed. Only took them 26 yrs hehe.

Lots of factors in the mix, never just one imho.

love
Lily

 

[Shufu]

I don't think that the "cause" is across the board--just as there are many triggers for other diseases such as cancer, heart disease, and other less severe illnesses. I DID have a very traumatic childhood and have had to fight the stigma that everything is a symptom of that. It's very annoying, however, my current therapist did put it in perspective when she said that extreme traume changes brain and immune development. Continual stress on the body causes adaptations of all of the bodily systems.

Her colleague has just finished a longtitudinal study of families with trauma histories that have been continued (ie: mother to daughter) and he found that autoimmune diseases were more common in those with a traumatic history that those without.

Of course, that's not to say that everyone with a traumatic history will develop lupus or everyone with lupus has a trauma history. I think that's simplifying it way too much.

In my mind it almost invalidates everything I feel. My past has affected my future--but everything is only a 'symptom' of something else... or is it? Would I have these problems anyway? Is it my genes (everyone in my family has some kind of autoimmune problem, but no lupus)? Or is it environmental?

It's sort of a nature or nurture debate, and no one's come up with an answer for that one either. A combination of both, I believe, is the answer. I also can't think about this for long, because it drives me insane. I feel completely invalidated in my feelings when people tell my that the trauma I suffered is the root cause of everything (therefore "get over it" and you'll be better). I also get tired of the constant comments about diet and how if I just tried this "one" diet everything would get better (it's cured people with cancer you know! You should at least try it! See you don't WANT to get better...)



Anyway. I've said too much that most probably did not make ay sense...

 

[KarolH]

I am so very tired right now so I just hope this makes sense.

I used to think it was really all about genetics yet there is not one person in my family as far back as I can trace that has anything auto immune wrong with them. So, in my humble opinion if this is about genetics then why am I the only one for many generations past and present???????

With that being said, I sustained a injury at work in July 2003 and I can honestly say that is when my body went haywire. Anything and everything that could go wrong did from loss of vision, to severe migraines, to double vision, numbness in my face, neck and extremities, drop foot, severe fatigue coupled with a feeling of being drunk and not able to walk well, etc...you get the picture.

For me it may be coincidence yet I can't help but to think the fall at work and hitting my head triggered something big in my system to go haywire.

What a very interesting thread and I am not sure how I managed to miss it until now???:lol::lol::lol:

 

[Clare.T]

The more they find out about the genetics of it the more it is clear that it is a very complicated business dependent on a particular mix of many potential genetic markers. It is pure chance which bundle an individual gets and on top of that, exposure to certain triggers dependent on those genetic markers.
There is no history of autoimmune disease in my family either as far as we can know. My maternal grandma had rheumatoid arthritis in her deformed hands in extreme old age. I suspect my dad may have had some sort of skin lupus - he certainly used cortisone creams a lot on his ears but no chronic health problems and he got tanned nicely despite being as fair in colouring as me who never tanned. My mother had no probs with sun either.

It's interesting that not so long ago stress was not considered important either as a trigger or exacerbator of lupus. Nowadays prolonged stress is acknowledged as among various possible triggers and trauma are definitely acknowledged. That's trauma in every sense, as in accidents or surgery or emotional or physical abuse or even child birth. The predisposed immune system can't distinguish between various forms of assault, whether it's natural hormones and natural functions or infectious illnesses or surgery whether essential or not, or plain accidents like car crashes or certain sorts of environmental exposures. In fact anything that places extra demands on the immune system. An interesting example in both skin lupus and psoriasis is that actual physical damage to the skin can cause lesions to appear in some people or new lesions to develop.

I find it interesting but not very useful to think what might have caused mine but there's nothing that could have been done to avoid it even if it had been known that I was predisposed. In some diseases there is a well known gene marker, for example Reiters syndrome or ankylosing spondulitis. But not everybody with those diseases has that gene marker and not everybody with the gene marker has the disease.

I can think of two obvious potential triggers in my lifebut Iwillnever knowfo

Cheers
Clare

 

[Megdalina]

Childhood trauma and SLE

I was diagnosed with SLE at 42, with no family history, but it was a stressful time so I figured I was predisposed and the stress pushed me over the edge. Over the next 10 years both my younger sisters were also diagnosed with autoimmune disorders. Again, no one on either side of our family had any related problems. I then developed a rare neuroendocrine ca (surgically curred ?) Then, I begain to wonder why 3 sisters in the same family should develop AD's and all I could come up with was a shared disfunctional stressful childhood. Then my half sister emailed me that she also had been diagnosed with SLE and several other distinct AD's and and I know her childhood was similar to oursso I began to read all I could find on the relatioship between childhood trauma and AD's. ?Most of the material is very scholarly place to start: They have a simple test to rate childhood experiences with possible adult illnesses and links to begin to explain the relationship. One important point I found in one study was that many people's health improved for a year after they took the test and realized there was a relationship!! I would love to hear from anyone with a view on this.

 

[keebler]

Hi Megdalina,

This is a very old thread. 7-3-2009.
I am going to close it. Perhaps you could start your own thread?
Take care,
Lyn