ONWARD ~ and ~ UPWARD Judith Florian, R.N.

FOCUS:

FORGETFULNESS AND HYPERVIGILENCE 

IN CHRONIC ILLNESS

The beginning of the problem...

I can't say WHEN my forgetfulness and confusion began.  It is only in looking back, and based on comments from others, that I can talk about "a beginning" for these problems.

I remember grade school being told that I seemed "different."  But at that age, I just thought they thought of me as "weird" -- at an age that ALL I wanted was to fit in. So, the comments made me feel bad about myself and even more self-conscious than I already felt!  Years later, the teacher I had said that she only meant that I seemed to be older than my years.  She said it seemed my brain wasn't working at the same level as other kids in the 6th grade, and that not fitting in "was the curse of many highly intelligent and highly creative persons."  Well, that didn't help much more than saying I was "different," to be honest.  I didn't FEEL more intelligent or creative at ALL!

Then,  in my 20s I was working on issues caused from child abuse and again, people told me that "you don't think like everyone else does."  (Well what does that mean, I remember wondering!"  By my 30s, I was getting more criticism for not only how people said I thought (in some way that differed from most people) but also for my watchfulness and hypervigilence about other people and things.  Indeed, being ever-so-watchful was beginning to be a problem to ME, because it is TIRING to be sooooo hypervigilent about "everything."  But, being that way was ALL I had ever known, traced back to my childhood where I had numerous "very important" responsibilities.  For example, at age seven I was giving my father injections every 2 hours of strong narcotics which had to be "just right."  Unfortunately, I had chosen a career in which I also had to do "everything just right" based on sound nursing principles within the Nurse Practice Act, so I never had any break from always thinking of details constantly.   Thinking of details was actually one of my strong points!  I could see the details of many different problems simultaneously (which nurses need to do everyday.  But most nurses can focus on the details of their job exclusively without interference.  It's more complicated and sometimes extra difficult if you've been through childhood abuses.)  

Along with thinking of details and holding a lot in one's mind at once, people who've been abused very often suffer from periods of confusion.  Unlike "thinking of many details constantly," confusion pops up unexpectedly and sometimes FEELS as though it wipes everything away completely (including all those "details" that moments ago the same brain could manage so easily).  Confusion is so confounding since there is usually no warning that your brain is about to go into "brain freeze" or "brain fog" and it is very disconcerting!  Now, the illuminating reality is that is it totally normal for most folks to have moments of brain freeze (it was a revelation to me though when I made that realization).  Normal people though seem to have FEWER times of complete confusion, and seem to recover themselves FASTER than a person who experienced childhood abuse.  Just look at the jokes and cartoons that are passed along on the internet about normal folks who experience times of forgetfulness and confusion.  It is well-known that normal conditions like aging and menopause can cause memory problems, for example.  But there, the person has something to point to as the cause, even if only said to their doctor or closest friends, or joked about through internet cartoons.  Persons who went through childhood abuses have suffered the "brain freeze" and "brain fog" pretty much all their lives, with seemingly NO reason.  So survivors feel very "different" than others of their same age group.  While friends have just begun to start joking how "I'm turning into a dumb blonde," survivors have felt from young ages they've ALWAYS been the dumb-blonde who is the butt of jokes.

Hypervigilence is widely known in dealing with abuse survivors and in PTSD.   It is a word that describes the state of "ever-watchfulness" that is common among persons who were abused as children.  The theory behind the word is that children had to become very watchful in abusive homes, to (try to) avoid hurt, punishment, abuse or molestation/rape..  One child may have had to carefully watch for signs of an explosive alcoholic parent, to try to avoid upsetting the parent and therefore avoid physical abuses.  Another child may have stayed awake all night, watching their bedroom door, fearing that a parent/step-parent/uncle/friend of the family would come to sexually abuse them, staying awake to try to avoid the act from happening (even though a child couldn't prevent rape/molestation).  Another child may have lived with an extremely critical parent, so the child tried in every way to "be good and do what is right" in EVERYTHING.  These roots of hypervigilence extend into all aspects of the child's life, and into their adulthood, even though the adult has forgotten WHY or WHEN they started to be a hypervigilent person.  But the hypervigilence acts as a collection point for details of every kind, with every interaction.  Hypervigilent people not only are thinking of details constantly from the immediate moment, but they also try to think ahead, think around, and think of every aspect of every situation.  And instead of collecting these "details" about an abuser or a person who MIGHT do them harm, adults with hypervigilence collect details in interactions with EVERYONE.  Indeed, it is not limited to interactions like talking to someone, it is about ANY person on a street, who is in front of you, who is on both sides of you, who is behind you.  It isn't consciously done -- hypervigilance just IS.  It's like wearing a radar machine every day of your life, with the radar collecting tidbits of information about people and objects 24 hours a day and transmitting that information to the hypervigilant person!

How hypervigilence ties to forgetfulness and confusion...

From the above bare-bones description of hypervigilence, let's go back to forgetfulness and confusion.  

A hypervigilant person has a ton of details in their head all the time.  And from time to time, the brain just can't hold any more--this is the simplest explanation of one kind of forgetfulness a hypervigilant person can experience.  Yet, even though it is so understandable that the brain would go on overload, the person living with this experiences it as a sudden and almost complete (or totally complete) loss of information AND the ability to think, think clearly, think rapidly, and act/react rapidly.  Suddenly details are just gone (what was I going to say?), or worse they feel all mixed up (is it Tuesday or Wednesday today?  Did I already tell this person this specific thing that I wanted to tell them?).  (Not knowing the day/date IS a very common thing to many "normal" people, but it doesn't seem normal to the hypervigilent person!  But, not JUST is day/date temporarily forgotten for the hypervigilent person, they also struggle with other things that seem to have gone "blank" at the same time. And just that "blankness" is SO disconcerting, that the period of forgetfulness can actually be made worse.)  This is why most "normal" folks say "just give me a minute --what is that guy's name?"  But a hypervigilent-forgetful person has higher stakes in thinking clearly and rapidly at all times and moments of forgetfulness feel so abnormal that the person unknowingly stresses themselves by trying to force their mind to work again.  Sometimes, a person cannot say simple words, even though they know the word they wish to say.  Sometimes, entire questions or answers are forgotten (like in a doctor's office), requiring additional phone calls later.  Often these persons are chronic list makers (a habit that seems to annoy those who don't have to write out their thoughts in order to remember what they want to do or say or have done on their behalf).

Add in illness, medication side effects, or pain to this, and the problems are now quadupled for the hypervigilent patient!   And, since doctors and medical personnel don't always realize or understand the hypervigilent mind, interactions can be frustrating, confusing and stressful for everyone.  

Ways to help reduce interference from hypervigilence, forgetfulness and confusion...

There are many type of meds that can contribute to confusion.  If it is possible based on the individual's medical condition, some medications could be adjusted, reduced or eliminated, IF those meds are known to contribute to confusion or forgetfulness.  If meds cannot be stopped or have the dosage reduced, the patient should try to plan around the side-effects.  For example, if a med's effects are experienced in 3 to 6 hours after taking the med, but the person feels clear-minded the rest of the day, avoid stressful tasks until the side effects are less for the day.  A friend of mine waits until after noon-time to do her finances and bill-paying, because her med side effects are worse in the morning.  

The same adjustments in life should be made when dealing with illness or pain.  Also, make time for quiet and rest.  Set aside time to just not think about anything - give your mind time to NOT have to work.  If you are a caregiver, realize that a patient who deals with confusion and hypervigilence NEEDS to have periods of quiet, without conversation, activities or people coming in and out of the room.  If there are unexpected distractions like these and people unexpectedly coming in and out of the room, the person's hypervigilence WILL kick in and that defeats the goal of a specified quiet time.  TELL the patient that NO ONE will bother them for 20 minutes and mean it!  This can be hard in a hospital or nursing home, but a nurse can put a "Do Not Enter" sign on a patient's door.  At home, a patient or family can instruct caregivers to NOT go into the patient's room during a certain time each day.

The person needs to become very aware of their own triggers (things that cause a symptom or reaction to be worse).  Triggers are individual but the person can pay extra attention and identify the triggers.  Then, figure out some things that would help to reduce the triggers and the problem times.  Once you've identified your triggers, and made a plan to deal with these, try to routinely use your plan.  Maybe you can ask that others stay away for 20 minutes each day, or that others need to knock before entering your room.  One person might try learning meditation while another might take up drawing as their relaxation method.  One lady I knew could knit without even looking, and used knitting as a way to unwind; she'd sit at the window, watching the birds and squirrels, while her knitting needles clicked away.  A young man used the time to simply dribble a basketball next to his wheelchair, while another man sorted and looked over sports cards he had collected since he was a child.  The activity should be low-key and not require a lot of thinking to do.

There are many ways to describe your problem and your coping methods to outsiders.  If you choose not to tell that you've been abused in the past, or that you have PTSD with hypervigilence, that's OK to not tell everyone.  Instead, you could say "My mind works better before 3pm, so I'd prefer to not get into activities or discussions after that time of day."   

Do yourself a big favor though -- give your mind a rest!

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Disabilities...... Home Health Care...... Sexual Abuse of Children...... Advocacy......... Jump to: Top of Page      If you have corrections to the content of this site or if you find broken links, please email me. The title "Onward ~ and ~ Upward" is a "motto" I used as a teenager and young adult --- then forgot about for a number of years.  I feel it is a fitting motto to strive for and a fitting title for the topics of this website.   (c) Judith Ann Florian 159 E. Main St. Girard, Ohio 44420 Disclaimer: This website is intended to convey information and discussion ONLY, on a variety of topics, and reflects the views of this author and submitters to this website.  The information provided on this website is not intended as a substitute for a medical opinion or diagnosis.  If you are suffering from an illness, injury, pain or other symptoms, please seek help and diagnosis from a medical professional.  If you are feeling suicidal or are thinking of harming yourself, in any way or by any means, call your therapist, your local 911, your local police department or other law enforcement, your local hospital emergency room, and your local crisis numbers. The webmaster of this site will not reply to emails from any person in a crisis situation. Copyright Notice - Information provided is for personal use only and may not be used on any other website.  All graphics and content on this web site are under copyright.  No portion may be reproduced, in part or in whole.  Contact the webmaster for information about publication rights.  © 2005-present, Judith Florian, Copyright - All rights reserved. Credit: Visit "The Art of Penny Parker" for elegant backgrounds and images.   This page was last updated on Saturday, April 22, 2006 15:57