This excellent article was written by Heather, a CF mom and posted here on www.TipsForCFParents.com under "Dealing with the Emotions of CF". Thank you, Heather, for your excellent writing and allowing me to share it here.

Also, here is a link to a FABULOUS website about pediatric medical trauma. http://www.nctsn.org/trauma-types/pediatric-medical-traumatic-stress-toolkit-for-health-care-providers

The Unspoken Concern:  PTSD experiences in a post-diagnosis household
By Heather L. Walter, PhD.

About a year ago, I was perusing medical journals (you know, for fun) and I came across the Invisible Patient:  post traumatic stress disorder in parents of individuals with Cystic Fibrosis[i]article.   I read the article twice and then I just sat there.  I was amazed because suddenly there was clarity.  All of the feelings that had swarmed my head in the five years since my daughter’s diagnosis were suddenly “normal”.   I wasn’t alone, in fact I fell in with approximately 63% of the other parents of children with CF who experienced some amount of post traumatic stress symptoms since diagnosis.  

So I made copies of the article and started reaching out to the online and in-person friends I had who were also parents of children with CF.   Some of my friends didn’t understand the statistics of the article, but when we discussed the results, I saw genuine tears in some of their eyes.   They weren’t alone either.    The article started resonating in all of our heads and we were, collectively, beginning to see that CF was NOT just an illness our children suffered from or were diagnosed with or were fighting…..it was a family process, and we – the parents, the caregivers – were, as the article was so aptly titled, the “invisible patients.”   Ours was an unspoken concern, because we didn’t know we were allowed to be the patient while we were trying so hard to be the strong parents for our kids.

Post-Diagnosis

Five years ago, after my daughter was born, she was whisked away from me to be taken to another hospital to manage a meconium illeus.  As I sat in my hospital room, recovering from a c-section and unable to travel across town to the Children’s Hospital, I learned about the possibility of Cystic Fibrosis, a disease I had never really learned much about.   When I asked the surgeon who called to discuss CF with me the prognosis of the disease, she casually spouted, “Oh those kids are living into their twenties these days,” as if this was good news and a point I should be thrilled about.   Four months and many confusing tests later and we were given positive confirmation that my daughter has CF.

Being told that your child has cystic fibrosis is never easy.   There are so many adjustments that need to be made to your life as you begin to wrap your head around a diagnosis like this.   In the early days, I remember thinking that I was feeling like someone pushed me off a plane in some foreign nation, like Japan, without a guide book or a translation dictionary.  I was standing still watching everything go on around me and I understood only a small fraction of what it all meant. 

Despite the warnings of my daughter’s CF team who told me the internet held a lot of outdated and inaccurate information, I sped off to the online-forums in dire need of some translation.   And over time, I adjusted.  We all adjust.  You learn the language of the land and the landscape, you accept the hours of treatments, you learn strategies for getting an 8 month old to take a nebulizer treatment or a 15-month old to swallow pills.  You create a new normal, and the “Japanese” that sounded like gobblety gook, starts to be a part of your vocabulary. 

And just as quickly as you learn how to spell and pronounce pseudomonas, you start to witness people in the CF community around you die.   The positive exciting news about better treatments and possible cures are mitigated by the harsh reality of those that are at the end stages of this disease.   The end stages seem so far away when you have a newly diagnosed infant, but for that matter so do the cures.     And with the introduction of each new treatment, each hospitalization, each new medicine, and each CF death you learn about. . .  the wounds re-open.  

Post-Traumatic Stress Symptom Clusters

The PTSD articles I’ve read talk a lot about the symptoms clusters of re-experiencing,  avoidance, and arousal; so I wanted to take a few minutes to discuss each of these categories of symptoms as they related to the CF parents existence.

Re-experiencing

Let’s start with re-experiencing.  Re-experiencing is a cluster of symptoms in PTSD that involve reliving the traumatic events that led to the PTSD.  The re-experiencing can occur through intrusive recollections, nightmares, flashbacks or various forms of psychological distress and reactions.   

In the invisible patient article, 62.9% of the sample indicated some re-experiencing symptoms, with the highest occurrence of symptoms being intrusive recollections and psychological distress.   When I think about these results, my mind says, “of course”!!!!

PTSD in a CF caregiver isn’t the result of one traumatic moment in time, it’s an ongoing constant.   Ever hold your own 3 year old down for bloodwork or a shot, and think, “wow, this is fun”?   But what about holding a 3 year old down, kicking and screaming, for FREQUENT bloodwork, daily aerosols, daily airway clearance, daily medicines, regular doctor visits??   The list goes on.   During a PICC line change less than a year ago, my usually very calm, well behaved, okay PERFECT, daughter practically pummeled the CF nurses she adores.  She does not like being held down, and the poor thing gets held down a lot.  

And while one instance of holding a child down against their will does not elevate to the level of long term traumatic event, doing so over and over merely serves as a reminder to the cruelty of this disease and the balance of forcing our children to do something they despise, for the larger good of their health.   Holding them down is bad, but CF is worse.    And we CF parents know this, and it is what allows us to allow our children to be tortured in this way . . .and it sticks in our brains to remind us what it all means.  

I don’t wake up in a cold sweat in post-war movie style examples of PTSD, but I do relive and re-experience all sorts of traumatic happenings around CF all the time.   And they can’t be brushed off with a nice little, “well at least it is over now” because I know what the potential future can be with this disease.

Avoidance

The second cluster of PTSD symptoms, are avoidance symptoms.  Avoidance includes cognitively selecting to ignore information, behavioral avoidance, amnesia, diminishment of interest and feelings of detachment and emotional numbing.   In the invisible patient article, only 11% of the CF caregivers reported avoidance symptoms and largely this was attributed to the cognitive avoidance rather than any of the other forms. 

The authors highlighted TWO rationales for this finding:

FIRST they discussed that the self selective nature of volunteering for a study might have actually worked against the study, in that those parents who were experiencing avoiding symptoms would avoid volunteering for this study, as an extension of that symptom.

I shared an earlier version of this speech with my husband a few days ago.   When I finished he told me I would have to read it one more time because he got distracted halfway through thinking about which of these PTSD symptoms he most resembled.  He then suggested that the results of the avoidance area must be grossly underrepresented. He agreed that in his own attempt to avoid some of the future realities of the disease that he would not be found researching online about transplant or end-of-life issues, nor would he volunteer for a CF study on PTSD.

SECOND the article discussed that unlike other types of traumatic events where it is a moment or repeated moments in someone’s earlier life, this form of PTSD comes in the midst of regularly reoccurring episodes and daily routine care and as the primary caregiver we do not have the luxury of avoidance.

 I think both of these arguments are valid, but I think the second one holds a large resemblance for me and to what I see in my friends that also have kids with CF.  Our children can avoid wrapping their brain fully around this disease and its implications, but most of us parents just can’t.  

Several years ago, my daughter had a tough couple of months.  She was hospitalized with an exacerbation and then hospitalized again to place a feeding tube.  Over the course of several weeks, we also had 4 ER visits as well.   At our follow up visit with the surgeon, she noticed the room held only a chair and an exam table.  She touched the table and asked, “If this is where I sleep mommy, where are you going to sleep?”  She was not quite 3 at the time, and hospitals were her “normal”.  For me, I wanted to avoid the reality of hospitals being her norm, but it was too in my face to be able to be normalized.

We, parents, certainly may have days or weeks or even months where we push the disease to the back of our minds and make conscious or subconscious choices to cognitively avoid the reality of it all.   We build a life separate from CF for our kids. . . but these are usually the healthy days.  We can somewhat normalize treatments, and medicines, and frequent doctors visits, but eventually we hit a moment that brings the mental blockade we’ve erected to protect us crashing down. 

For some it’s the decision to place a feeding tube, or working with teachers to make sure our child gets the calories or medicines they need…..other times it’s the hospitalization, picc line, endless antibiotics, or the dropping numbers during regular pulmonary function testing.

Avoidance and denial are nice places to visit, but you can’t stay there forever. 

Arousal

The final cluster of PTSD symptoms is the Arousal ones.  Arousal symptoms represent the hyper alertness that occurs post trauma and include irritability, insomnia and hyper-vigilance.   Like with the re-experiencing cluster, 62.9% of parents in the invisible patient article reported symptoms in the arousal cluster. . . and a whopping 71 percent of them reported arousal related to hyper-vigilance.   

Hyper-vigilance.  HA!   NO KIDDING??!!   So there is a word that explains a CF parents need to turn “Purell” into a verb?    As in, “did you purell her hands, yet again, since she just ____________?”    You can insert anything you want into that blank.   Since she just touched a frog, since she just hugged grandma, since she just got home from school.   Purell is the CF parent’s tool to avoid the dreaded germ.  

When our kids are diagnosed we are given a set of tools.   We are told to keep those healthy lungs healthy….avoid illness….follow good hygiene, do treatments, follow protocol.     The rest of the things we hear about CF are totally out of our control.  We can’t control the rate of progression that this disease takes, or the pseudomonas hiding out in her lower left lobe.  But we can keep those kids “purelled”.  We can make sure treatments aren’t missed.  We can follow protocol.  And most of us try to . . . to a fault.  

Read the newly diagnosed boards on some of the online CF forums, you can see it, this hyper-vigilance.   “Should I take my 1 year old to my cousins house”   “Is it okay to send him to preschool”   “What do I do, we missed a treatment”???    The questions go on and on . . . because we are scared . . . because we can’t control much . . . because we desperately don’t want to lose our children to this disease.

So the fact that nearly two thirds of those studied reported hyper-vigilant tendencies doesn’t surprise me one bit.   We ARE hyper-vigilant and most of us aren’t even sorry about it.   When we aren’t or we drop our guard for a moment (probably when the short term cognitive avoidance sets in) we also become plagued with incredible guilt for not being hyper-vigilant enough.

In Conclusion

 As I conclude, let me touch on a few summaries for the CF care team members to remember as you interact with the families that are an extension to your CF patients.

Parents with kids with CF DO spend time re-experiencing, reliving, having nightmares, focusing on what might happen….how can we not?  We live and re-live not just the actual day of diagnosis, but also the growing knowledge of what is likely to come. 

And we parents learn to avoid the cognitive truths in order to live, even if we can’t avoid the reality of the disease itself.   Sometimes, usually the healthy times, we try to sink deep into normal.  But CF rears its head at the most inopportune and unlikely times.    It creeps in as we are planning a vacation and our child suddenly develops a bowel obstruction, or two weeks before school starts the cough get worse and we know a hospitalization is looming.   So perhaps we can’t really avoid CF, some of us do it better than others – we forget, we play mind tricks, we redirect our energies, but we still have to face CF head on with treatments for 2 or more hours every single day.

And we experience arousal symptoms.   Many of us are conscious that we have become hyper aware and hyper vigilant in our care for our children, in our hopes to control whatever small   amount of the disease that we CAN control.   In so many ways,   Hyper-vigilance is synonymous with so many CF parents.

Some days the hyper-vigilance, avoidance, and re-experiencing makes us fragile and easily wounded.   Perhaps we are the invisible patient who also needs a little medical TLC.   And other days, these symptoms are what can make us the most powerful ally to the CF care team –  today I serve as a parent mentor for our hospital, as a member of the CF Family Advisory council, I edit the Current Features newsletter, and most importantly try to be the most powerful advocate for my children.   We KNOW what we have to lose, and with the help and direction from those who care for our children, we can channel these symptoms of post traumatic stress into healthy coping mechanisms to support our children and help them thrive.

                                                                                      ******

Heather Walter has a PhD in Communication (1999 from The University of Buffalo).   She is  currently an Associate Professor at The University of Akron, and also the Director of Graduate Studies in the School of Communication specializing in conflict, organizational, and health communication. 

Heather has three children and the youngest has cystic fibrosis.  She serves as a parent mentor at her children's hospital, is a member of the CF Family Council, edits the Current Features (CF) newsletter, is the team leader of a national family great strides team, and is on the planning board for the Akron Wine Opener CF  fundraiser.