A bit of a delay from the last post; my husband came down with a bad cold just after returning to work in the New Year, and despite my best efforts (sleeping in the guest room, wiping down everything with Clorox wipes and practically hosing him down with Lysol every day), less than 24 hours after he was feeling human again, I woke up with a fever of 103 and it turned out to be pneumonia for the third time in just over a year. It’s taken me over a week to kick most of it out of my system, and now I’m just left with the residual exhaustion and coughing fits.
Anyway, now that I’m back, I thought that it would probably be a good time to discuss PTSD, given everything in the news lately with the premiere of American Sniper and the upcoming trial of the man accused of killing the movie’s real-life subject, retired Navy Seal Chris Kyle. Many people are familiar with the acronym, but most tend to identify it with military veterans or those who have been witness to acts of war; however, PTSD can also occur after a lengthy or traumatic illness, both of which some of those with IBD can certainly identify with, myself included. I’ll include the full diagnostic criteria below; while lengthy, I think it’s important to realize if PTSD may be affecting you or someone you care for.
In 2013, the American Psychiatric Association revised its definition of Posttraumatic Stress Disorder (PTSD); the criteria for which is detailed below:
Criterion A: Stressor – The person was exposed to death, threatened death, actual or threatened serious injury, or actual threatened sexual violence, as follows (one required):
- Direct Exposure
- Witnessing, in person
- Indirectly, by learning that a close relative or close friend was exposed to trauma. If the event involved actual or threatened death, it must have been violent or accidental.
- Repeated or extreme indirect exposure to aversive details of the event(s), usually in the course of professional duties, (e.g., first responders, collecting body parts; professionals repeatedly exposed to details of child abuse). This does not include indirect non-professional exposure through electronic media, television, movies, or pictures.
Criterion B: Intrusion Symptoms – The traumatic event is persistently re-experienced in the following way(s): (one required):
- Recurrent, involuntary, and intrusive memories. Note: children older than six may express this symptom in repetitive play.
- Traumatic nightmares. Note: children may have frightening dreams without content related to the trauma(s).
- Dissociative reactions (e.g., flashbacks) which may occur on a continuum from brief episodes to complete loss of consciousness. Note: children may reenact the event in play.
- Intense or prolonged distress after exposure to traumatic reminders.
- Marked physiologic reactivity after exposure to trauma-related stimuli.
Criterion C: Avoidance – Persistent effortful avoidance of distressing trauma-related stimuli after the event: (one required):
- Trauma-related thoughts or feelings.
- Trauma-related external reminders (e.g., people, places, conversations, activities, objects, or situations).
Criterion D: Negative Alterations in Cognitions and Mood – Negative alterations in cognitions and mood that began or worsened after the traumatic event: (two required):
- Inability to recall key features of the traumatic event (usually dissociative amnesia; not due to head injury, alcohol, or drugs).
- Persistent (and often distorted) negative beliefs and expectations about oneself or the world (e.g., “I am bad”, “The world is completely dangerous”).
- Persistent distorted blame of self or others for causing the traumatic event or for resulting consequences.
- Persistent negative trauma-related emotions (e.g., fear, horror, anger, guilt, or shame).
- Markedly diminished interest in (pre-traumatic) significant activities.
- Feeling alienated from others (e.g., detachment or estrangement).
- Constricted affect: persistent inability to experience positive emotions.
Criterion E: Alterations in Arousal and Reactivity – Trauma-related alterations in arousal and reactivity that began or worsened after the traumatic event: (two required):
- Irritable or aggressive behavior
- Self-destructive or reckless behavior
- Exaggerated startle response
- Problems in concentration
- Sleep disturbance
Criterion F: Duration – Persistence of symptoms (in Criteria B, C, D and E) for more than one month.
Criterion G: Functional Significance – Significant symptom-related distress or functional impairment (e.g., social, occupational).
Criterion H: Exclusion – Disturbance is not due to medication, substance use, or other illness.
It is also possible to experience PTSD with dissociative symptoms (experience of being an outside observer or detached from oneself) or with delayed onset, where the full set of symptoms is not experienced until at least six months after the trauma(s). While these last two are not necessary criteria for diagnosis, they are experienced by some.
My own experience with PTSD symptoms began somewhere in the final bleak months before the first emergency surgery to remove my perforated colon. The pain had reached a point where I could completely identify with the dissociation described, and I still firmly believe this was my body’s way of trying to protect me on some level. However, the actual full-blown PTSD symptom profile didn’t hit me until after the obstruction surgery in March of 2007. By that point, there had been several major surgeries and a good deal of physical trauma to my body, but it was that surgery that put it over the edge. I think it had to do with waking up from anesthesia, once as I was literally being wheeled out of the OR and either came out of it too soon or the breakthrough pain medication wasn’t enough to calm the feeling that I was being ripped in half at the abdomen. I don’t know that my eyes ever opened, but I remember screaming that I was in pain and writhing on the gurney while several sets of hands were holding down my arms as I attempted to claw at the searing pain in my stomach. What I did not know at the time was that there was a nine inch long incision that was left wide open due to a high risk of infection. I remember lots of voices talking and then feeling several people sit me upright and lean me into the chest of someone else, presumably another doctor or nurse, so they could expose my back and put in an epidural to block the hideous pain I was in. I never saw any of their faces, but I remember the person in front of me cradling my head against his shoulder as he supported my weight and tried to comfort me quietly while the people behind me handled the epidural. I still remember his voice in my ear telling me to hang on, and that the pain would be over soon. Then things went black again, and I was drugged with enough morphine that I didn’t truly “wake” for almost another day, at which point hearing all of the machines beeping and seeing all the tubes coming out of me was enough to send me into an immediate panic of knowing that something had gone horribly wrong.
It was after that surgery that the sleep problems started; while I would be completely exhausted and desperate for rest, sleep would not come. When it did, I slept fitfully, waking after 20 or 30 minutes clawing at my arms or abdomen from vivid nightmares, occasionally drawing blood. I felt like some sort of alien, completely removed from the scope of human existence and angry that they hadn’t just let me die instead of suffering like this. Florescent lighting must have triggered memories of being wheeled into the operating room, as my blood pressure would surge, my breathing would become labored, I would get tunnel vision and people’s voices around me would become muffled, as if I were hearing them underwater. The doctors tried sleeping pills to help me at least catch up on some of my rest, but many of them left me either completely indifferent to their effects or wandering the street in my pajamas at 2am with absolutely no recollection the following morning of what happened. Finally, after five or six failed attempts, I was put on 30mg of Restoril, a benzodiazepine that helps with anxiety as well as sleep, which worked, and I still have to take to this day in order to sleep.
Finally being able to sleep without the horrible nightmares gave me some relief, but I was brought crashing back into that hospital room one day when, while walking through the mall near the men’s fragrance counter, I caught a whiff of cologne that immediately sent me into a panic attack. Couldn’t breathe, couldn’t see, couldn’t hear; as I crumpled into a ball on the nearest bench, I felt my head being cradled against a shoulder and heard a man say softly again “hang on, the pain will be over soon”. I realized later that day that must have been the scent the male nurse or doctor was wearing as I was leaned into him so the epidural could be administered. This episode happened almost two years afterward, and to this day, if I so much as catch a whiff of that same scent, I am immediately transported back to that moment. Probably not the kind of brand recognition Ralph Lauren had in mind.
While the worst of the effects have thankfully passed thanks to a good bit of therapy, I do still get the occasional nightmare that will wake me or leave me with deep scratches on my arms, and even now, almost eight years later, I still struggle with dissociating from my body in intimate situations, probably the result of being poked, prodded, cut and eviscerated so many times over the years. It’s hard to be touched in certain areas (basically anywhere from my ribcage down to my bum) and not feel as though something bad is about to happen when that has been my experience for so long. I have to really work at staying in the present during those times and not let myself regress into the past, and it’s not easy. Luckily, my husband understands this and is patient with me. At some point I probably will try biofeedback or something like it to see if that helps, as it has gone on long enough.
The bottom line is that PTSD or similar symptoms don’t have to rule the rest of your life. A trauma survivor once said it best: “Some people’s lives seem to flow in a narrative; mine has had many stops and starts. That’s what trauma does. It interrupts the plot. You can’t process it because it doesn’t fit with what came before or what comes afterwards”. Whether you are experiencing just a couple of symptoms or the full spectrum, there are dedicated professionals out there to help you cope, not to mention those who have been down the road before themselves and come out on the other side. All you have to do is ask.