For some years I've been aware of my discomfort when people with, e.g., cancer, CH,  describe themselves as "victims" who are "fighting" their disease.

Cognitive therapies focus on  a core dynamic: How we think/talk to ourselves CREATES corresponding emotional states. When I talk "suffering, victim, unfair",etc. I generate feelings which work to sap me of confidence, strength, etc.--the very qualities needed to support my efforts at self-care.

Just as an example: I live in a community of 200 folks who are 55+. We have an extremely insignificant experience with crme but years of rumor mongering has created a state of mind such that a doorbell ringing after sunset has become seen as a sign of impending home invasion or ??? You can imagine the self-imposed prison which such a state of mind creates: people who won't walk in a very attractive community, scanning their environment for threats (which increase the fear), talking about crime in Los Angeles/Philly as if the experience there has some bearing on what is going on in Delaware.

Just asking you to consider how your self-discourse is influencing how you feel about your CH and, in turn, how your capacity for self-care is influenced.

IMHO, the government is largely responsible for fostering the victim mentality. When an organization's success is dependant on how many "victims" it saves, and there is no force to counter it, the push to create this mentality will become overwhelming.

JMHO, FWIW.

Interesting topic, Bob--one I’ve thought about often.  Victim mentality comes from fear and the belief that one has no control over a situation.  Your example of the 55+ community seems to be universal in our culture.  I’m guessing it has a lot to do with too much watching of the news and television commercials which market using fear.

Words are very powerful.  I wholeheartedly agree with you regarding the poor choice of words some people use to describe their lives and health situations.  Although  I’m not sure I believe that consciously changing our vocabularies can permanently change the way we see ourselves, it couldn’t hurt to try.  It also couldn’t  hurt to use words on this message board that don’t convey to others a victim mentality.   That is why I have never and WILL never refer to CH as the “beast”--as if something outside of us is doing something TO us, the victims.
Best,
Pat

Pat, this cognitive approach has been so well researched that it has become a major form in therapy. It's behind my little piece:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Every therapist I know cringes when we hear: "Well, I'll try...." We know this leads to failure--you can all but feel the absence of commitment.

There are other major cultural forces contributing to the problem. Nationally, about 40% of high school students don't graduate! Depending on the poll, something around 60% of Americans don't read a newspaper, book, or magazine. Consider what these statistics say about the kinds of thinking/capacity for thinking fills many of our citizens.

It's not a matter of blaming but of being aware that we have the capacity to improve the quality of our lives if we are aware of how self-sabotage operates.

tho early for me to think, i will attempt to address........throughout my life, in all situations, i have always made it my mission to find the positive in everything.............i truly believe in  the power of positive thinking ........the more one focuses of the negatives in their lives, the more negatives will enter their lives...........when the book "the secret" came out , it was not a new thing to me................majority of situations we have control over, or at least the power to attempt to control to some degee...i try not to ever label myself as a "victim", and have succeeded extremely well..................i feel that all that has happened to me in life makes me that stronger woman, and i can and will deal..............i am that person who always sees the glass half full.......................however, i do disagree with you, pat, for i do feel CH is "the beast" .......to me he is the beast, tho i can/will fight him will all i can.dont know if my reply has to do with the topic, it's my words for the morning!!!!
deb

I am not a victim.  I am simply an unfortunate person with a brain deformity that causes me immense pain.  Nobody did a thing to us to cause our condition, therefore, how can we be victims?

Now I could listen to an arguement that we are victims of insurance companies denying us proper medication.  And victims of a government that denies alternative and socially unacceptable forms of medication.  But a victim of CH, no way.

I suppose one could argue that it depends on which definition of victim is being used. At dictionary.com there are 15 definitions (and yes, there is some overlap between definitions).

Good subject Bob... and we ARE victims of our own thinking. I really believe that.

Deb you're right -- think positive every chance you get - I believe that also. Oh we have our days, but there's always tomorrow and things will get better - right?

I've always had this theory (I'm old - I have a lot of theroies) - if you think something bad is about to happen - plan what you'll do IF it does and then FORGET it unless it happens. I call it, "The Plan for the Maybe" theory. Reasoning - if it happens, you know what to do - if it doesn't you haven't spent a lot of time worrying about it. Works for me.

As far as being afraid to open your door after dark.... don't know what to say on that one... Sounds like you're prisoners in your homes. I always figured locks were to keep honest people out - probably why I don't bother to lock doors (city or country). I lose keys so I leave doors unlocked for MY convience. I may get invaded someday or mugged or whatever, but so far so good... and I don't have near as many wrinkles as my neighbors who sit up at night and worry about "what might happen".

That's just my 2 cents worth. Oh I do keep a loaded gun in the closet (for coyotes - don't want them bothering my dogs and cats), but don't wake up unless the dogs let me know that something is really close to the house.

Hugs BD

Great post, Bob, thank you. :)

I don't see myself as a victim what comes to ch. I do refer ch as the devil/the beast, but for me, that is part of dealing with ch, nothing more.

Just like Deb, I believe in the power of positive thinking (and aguess it's not that surprising that I happen to have The Secret in my bookshelf) and I want to keep my optimism and positive thinking going, in cycle or out, and most of the time I can do exactly that.

And I've noticed that when I know exactly what to do when the worst (in this case, getting hit) happends, I can maintain my optimism better - aguess it's the same as Barb's theory.

I recall what it was like to feel dreafully scared at night - that was me as a child. My childhood home isn't located near a busy street, but my room was right next to the front door, so naturally I always feared that should someone break into the house, they'd attack me first. So far, no one has done that (although more than 20 years ago some did try to break in via the garden's side, there's still a tiny scratch at the window) and I learned to let go of that fear and replace it with normal ideas of protecting oneself. I'm not afraid to leave my home at night, although I rarely do. But when I do, I'm not drunk, I don't go to places which are known to be dangerous, I don't act carelessly.

Sanna

I am not a victim.

B

I'm right there with BD on one of her many theories and if all goes as it has been I have about 50 minutes until the next hit and if I am wrong then I have my O2 next to my desk for no reason.  Seriously, I don't believe for a minute that I am a victim, I unfortunately like the rest of you have cluster headaches, but like some of you said I do prepare myself.  I can think as positive as I might, but trust me when the beast decides to strike he will regardless if I had woken up that morning as said "Today is going to be a PF day".  The beast has a mind of its own, so for now I stay as prepared as I can.  Wishbone.

Ahhh, this interesting.  I think that for a while--probably in the '90's in the self-help era "victimology" became the new way of thinking.  Now there is the backlash againt that.  BUT, a spade is a spade.  Yes, one is a victim of cluster headaches.  How one reacts to that fact is a different story.  But yes, I believe people are victims of cluster headaches.  Who may turn into warriors or incredibly strong people, etc.
It sounds like the people in your neighborhood are experiencing group paranoia.  There is nothing paranoid about feeling besieged by the headaches as I know you and everyone here well knows.  Just my 2 cents.  As I saw this discussed somewhere else a while ago and didn't comment then.

Let me explain:  if I saw the headaches happening to someone else especially over an extended time period I would definitely feel that that person was being victimzed by the headaches.  I would not say oh you are a victim all is hopeless,  nonetheless I would feel that they were being victimized.  I hope this makes sense, because it's how I honestly feel.

I swear to God this mentality causes anxiety disorders in some! :(

Anyway, I'm not a victim either dammit!!!

:)

Quote:

vic·tim [ víktim ] (plural vic·tims) noun   Definition:   1. somebody hurt or killed: somebody who is hurt or killed by somebody or something, especially in a crime, accident, or disaster a murder victim 2. somebody or something harmed: somebody who or something that is adversely affected by an action or circumstance a victim of her own success 3. somebody duped: somebody who is tricked or exploited 4. living being used for sacrifice: a live human or animal used as a sacrifice or in a religious rite 5. helpless person: somebody who experiences misfortune and feels helpless to remedy it [15th century. < Latin victima "animal offered as a sacrifice"] vic·tim·hood noun fall victim to somebody or something to be affected, harmed, or deceived by somebody or something

I think we all have a choice here...

Melissa wrote on Aug 6^th, 2008 at 10:19pm:

I swear to God this mentality causes anxiety disorders in some! :( Anyway, I'm not a victim either dammit!!! 5. helpless person: somebody who experiences misfortune and feels helpless to remedy it :)

U ROCK MELISSA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Defintion number 2 is kinda what I was thinking of.  
If you want to pick just one definition that's not really how the language works.  
Modified to say:  Whatever common sense tells you, that will be the answer.  Is a doorbell ringing a sign of an immanent neighborhood invasion?  Common sense says.... no.  Is a person with cluster headaches a victim of unfortunate circumstance?  The answer would be yes.  Well, unless of course full enlightenment has been reached, spiritual perfection realized, which, well...or maybe a Jedi master...(which I admit I am...on good days, you know how it goes, that irkesome concentration thing)

I am a special and unique person  - just like everyone else.
I have bad things happen to me - just like everyone else.

CostaRicaKris wrote on Aug 6^th, 2008 at 11:01pm:

I am a special and unique person  - just like everyone else. I have bad things happen to me - just like everyone else.

And I'm gonna die - just like everyone else.

I am not a victim.

B [/quote]



21 yrs. chronic.

I agree with Bill.  Anyone who calls me a victim  dimishes me and the good fight I've been waging.   Linda  

Not a victim, and not a sufferer.  I don't use either word to describe myself, nor do I use it here.

Descriptive words have power, and self-descriptive words have power over how we look at ourselves, and how we react to the challenges we face.  

As far as I'm concerned, it's simply an aspect of who I am.  It seems to be inseparable from the rest.  I deal with it, and move on.  That's all.

Best,

George

Nope, I am not a victim, either.

After 29 years of this, it is just a part of me.  Just like my blue eyes, curly hair, super sexy body, extreme good looks, humility ...

I DO call it the BEAST though, as I feel it has a personality, and is always trying to fuck with your mind.  It is easier to me to give it a name and personality.

But that is just me ...

Chuck

wrote on Aug 6^th, 2008 at 11:10pm:

CostaRicaKris wrote on Aug 6th, 2008 at 11:01pm: I am a special and unique person  - just like everyone else. I have bad things happen to me - just like everyone else. And I'm gonna die - just like everyone else.

Of course.. none of us get out of this life alive.
Like the bumber sticker says... Sh*t Happens. What matters is what we do with our lives despite it. Do we lay down and say "Why Me?" (Okay maybe for a little while) But then we get up, take a deep breath, count our blessings and move on.
In a way, I don't think of myself as just like everyone else. When I compare myself to most people in the world, I think I'm pretty damn lucky.

I am a "victim
1 : does not apply                                                                                 2 : an individual injured or killed (as by "disease" or accident)
3 : a person cheated, fooled, or injured (a victim of circumstances)
 
Terry (the no-one important but wanted to state my feelings)

I agree with George, words do have power, however a person with relativly new at dealing with this, those words are their vocabulary.
It takes time experience knowledge and personnel growth through websites like this . to able to achieve that thinking that i am not victim. for me I am a christian first, husband, and a few others, then I simply have ch. the growth and strength to crawl out of the pity pot tkaes time. I am thinking the clock moves slower for me but eventually i will get there.

Karl

Victim makes one sound helpless.  I think I am still in denial, lol.

Charlotte

I used to be a CH victim... and then I came here, got some information, got appropriately goaded into actually doing something about it. Got Oxygen. Got Imitrex. Got other ideas.

No longer a victim (except for those few times when one breaks all the way through and ramps up to above a Kip 5, I still get a little victim-ey).

Scott

Very good post, and the article was great too, Bob.

I've personally never thought of myself as a Victim of anything...other than my own mind at times!  I prefer the term "Survivor" when talking about finite medical conditions.  I don't really think of my headaches or other medical conditions as things that I am a victim or survivor of, because they are ongoing, daily parts of my life.  I am NOT my conditions, but my conditions ARE a part of me and have affected who I am as a person in some way.

A long time ago, I wrote a post on a couple of different headache message boards about positive things I've gained from the headaches.  I do note the things I've lost, in particular my personal dream of becoming a doctor, but I also note the things I've gained - and those things are many.

I was just telling someone today that if you believe that nothing will work (in terms of treatments), then it is likely that nothing will work.  I'm not saying that the mind controls all the physical aspects of our condition, but mindset plays a huge role.  We have to, at the very least, go into each treatment believing that it will work or at least has a chance of working.  Assuming that a treatment will not work before even starting it is like shooting yourself in the foot.

Also mindset plays a part in how we deal with the actual attacks.  It is my personal belief that losing it, flying off the handle, or getting severely agitated or worked up during an attack only serves to make it more intolerable to bear.  Everyone is different in how they deal.  I know some ER docs have looked at me, at least, and declared that I couldn't be in the pain I said I was in because I wasn't yelling and screaming, crying, carrying on and so on.  Personally I cannot react to pain, even severe pain, that way - there are usually minor ways of breaking down, but for the most part I think of trying to meditate and stay calm through the pain and BREATHE - as best I can.  Obviously CH still makes me anxious during the attacks, but I try as best I can not to let it take my mind, too.  If I can try to stay calm in spite of how absolutely horrible I am feeling, then I think it makes the pain a little bit easier to bear.

I'm sure some people will probably say that means I haven't experienced the worst of it, but that's not true.  I'm no perfect person - I've just found that the mind has a large part in how we experience our pain.  The more anxious and agitated I get when in pain (and there are times I just can't help it), the worse it seems to be.  I know when I woke up from my bilat knee surgery, I was shaking and had tears streaming down my face from the pain, and the nurse came over and said, "You're just making it worse" - but my reactions were actually totally involuntary.  They started before I even fully awoke and realized the intensity of the pain.  Sometimes you just can't help it.  After my stim surgery, I was also in quite a lot of pain - but I only started crying once I saw my parents - and then no matter how hard I tried, those tears would keep starting up again.  But getting worked up just seems to make it worse in the long run.

Anyway - I went on a long tangent.  I just meant really to say that it's a great post and a good thing to think about.  I say I'm a victim of my own mind sometimes because I let my own depression get the best of me sometimes.  I let those distorted thoughts really make me feel worse than I should.  Your post and article are a good reminder to say, "Hang on a second.  What is a rational answer to this irrational thought?"

Thanks :)

Carrie :)

Carrie, that was a wonderful post dear. Should be required reading for any newbie. I am unable to figure out how to quote exerpts, but then, I really don't need to. The whole thing was golden. Took me years to figure out some of what you are saying. My impressions:

Survivor, NOT victim...yup!

I am not CH, just happen to have it...yup!

There ARE positives, and while the negatives sometimes seem overwhelming, they aint...yup!

Ya gotta believe(Tug McGraw)... the power of the mind is untapped and unappreciated (yet)...yup!

How you react to a hit can have a major effect on the perception of it... Myself, I used to rage and rant and adrenalize, and pay dearly for that. The pain may not be less, at the time, but the overall effect is not nearly as bad if you can remain as calm as possible and just BREATH (way easier said than done, but worth it)...yup!

Screw a doc, or anybody else, who belittles our coping mechanisms. They'll never understand anyway...yup!

Depression get the best of me sometimes?...oh my, that's a whole 'nother story. Being here, at ch.com, well, it's like a cold beer
after mowing the lawn on the hottest day of summer. NOTHING like it!

Best, and THANK YOU!

Jon