Thursday, June 3, 2010

Thursday's Therapy - Child-Loss Grief - An Invisible Disability?

Thursday's Therapy

Child-Loss Grief - An Invisible Disability?

Have you ever heard of an "Invisible Disability"? I never had.

This week, a Grieving-Mother friend of mine (See @DanielleHelms on Twitter) informed me that Post-Traumatic Stress Syndrome (PTSD) is an "Invisible Disability."

I was amazed because the label so aptly fits the symptoms I have experienced across these three years and ten months of Child-Loss grief.

The following segments are excerpts from different articles and/or from former posts of mine as identified at the end of today's post:

What is an "Invisible Disability"?

An invisible disability, also known as a hidden disability, is any disability (something that significantly affects your normal life activities) that isn't obvious to an onlooker....


Support for people with invisible disabilities

People who suffer from invisible disabilities often don't get the support they need from family, friends, and even their doctors because they may look very healthy and still be severely disabled.

Even worse, people may accuse the disabled person of "faking" their illness, exaggerating their symptoms, being lazy or shirking their responsibilities, and, in turn, the disabled person does not receive the help they may desperately need from others. They may begin to doubt themselves and, in turn, exacerbate their symptoms by attempting to act as healthy as people expect them to be based on their appearance.


"I write this article as an attempt to raise the awareness of a medical fact. There are those among us who suffer invisible disability and, as such, seem to ghost through life without being useful members of our busy society. In fact, they seem to have gotten away with the chores of life and could be seen to be slacking off or avoiding responsibility...

We are of the opinion that there are some people who do not understand but that there is a certain element who do not want to understand because they cannot see the disability...

It is a sad comment on our society that certain people do not understand a disability that cannot be seen or readily identified...

And then there is another kind lady in my life who has become a good friend through my writing experience. She suffers from chronic PTSD. She avoids stress and worries about people finding out about her illness as it is not taken seriously. Her invisible illness has its own twists and turns but again parallels the experiences of those discussed in this article.

To those who do not understand or do not want to understand the life of those of us with invisible disability, I would like to leave you with the words of a Paul Simon song:"

“. . . a bad day is when I lie in the bed and I think of things that might have been.”

~David Bedworth


What causes Post-Traumatic Stress Disorder (PTSD)

  • 8 generic dimensions of traumatic stress that cut across different types of traumatic events
    • Threat to one's life and body integrity
    • Severe physical harm or injury
    • Receipt of intentional injury/harm
    • Exposure to the grotesque
    • Witnessing or learning of violence to loved ones
    • Learning of exposure to a noxious agent
    • Causing death or severe harm to another

Is PTSD a biopsychosocial trap?

Extreme stress produces a variety of long-term social consequences, such as depression, phobias, and pathological grief. PTSD, however, involves a unique combination of hyperarousal, learned conditioning, shattered meaning propositions, and social avoidance. Such complexity is best accounted for by the co-occurence of several pathogenic processes, including

  • a permanent alteration of neurobiological processes, resulting in hyperarousal and excessive stimulus discrimination
  • the acquisition of conditioned fear responded to trauma-related stimuli
  • altered cognitive schemata and social apprehension, resulting from a profound dissonance between the traumatic experience and one's previous knowledge of the world. This combination, which may not exist in other stress-induced disorders, makes PTSD a "biopsychosocial trap," in which one level of impairment prevents self-regulatory healing mechanisms from occurring on other levels.
~Bessel A. van der Kolk, M.D.


Excerpts from my 4/15/10 Post:

...(A child-loss griever should be treated as)...someone who has encountered a threatening and traumatic life event that results in emotional and behavioral responses common to those who have survived traumatic events.

(A) trauma survivor (will make) attempts to re-establish safety following experiencing something that was very unsafe or life threatening. A traumatized person will go to great lengths to attempt to find safety and security again... (These reactions simply mean the grievers have been traumatized and are trying to regain enough of a safety-net of reduced toxicity so that they are safe enough to begin to heal. Grievers may need to set boundaries, for instance, with "toxic" people, but this does not mean the griever is trying to "control" people; s/he is merely trying to create a safe environment for healing to take place, for grievers often) feel as if their lives have been turned upside down and shattered.

What does PTSD feel like?

...Most (people) with trauma symptoms feel as if they are going “crazy”- like they’re on a roller coaster that has no end.

(You may have symptoms) much like those who have experienced other life-altering or threatening events, such as accidents, assault, disaster,

abuse, or even combat. Those with post traumatic stress experience helplessness and horror as an immediate response to the traumatic event. The

resulting symptoms fall into three major categories.

  • First, they have intrusive thoughts/remembrances of the event. This can take the form of flashbacks, recurring dreams, intense reactions to reminders or “triggers” that may symbolize something about the trauma or feeling as if the traumatic event is happening currently.

  • Second, they attempt to avoid memories or reminders of the traumatic event. They may go out of their way to avoid places or people associated with the trauma, avoid talking about the event, or even forget some details of the event(s).

  • Third, they experience increased arousal. That means they are highly anxious, startle easily, are troubled with nightmares, etc. They are on high alert, hyper vigilant and aware of potential “threats.” They can become highly irritable and have extreme anger.

All of these symptoms are in response to the trauma. For a PTSD diagnosis, these symptoms must be in place for a month or more. For some trauma survivors, the symptoms come on later, while for others they start immediately after the disclosure (of the trauma)....

(Most people relating to you as a griever) miss the trauma. They acknowledge the pain and devastation but jump immediately to identifying the behaviors and emotions (you have as a griever) as signs of (poor grief resolution) rather than those symptoms that are typical in those who have had horrible things happen to them.

~Barbara Steffen (with my additions relating the trauma to child-loss grief)


PTSD also seems to follow a similar course as the five stages of grief.

The first stage being denial: "What I went through wasn't that bad, I wasn't affected."

Then the bargaining stage: "If something else in my life would only get better, I wouldn't have these problems."

Then comes the angry stage of grief, some people get stuck in this stage, which contributes to the autonomic nervous system arousal of PTSD.

Depression, which is a normal consequence of trauma as well.

Finally, the acceptance stage sets in.

These stages are recycled, over and over again during further stress/trauma as well.

The symptoms of PTSD all serve a valuable purpose in the healing process.

When a person sustains a real physical injury, numbness sets in as a means of surviving that real physical pain. It's normal for people with PTSD to go numb to survive an emotional injury. This numbness, protects a survivor from the things they are not yet able to face.

There are more physical injuries caused by trauma. Like depleted cortisol levels. Trauma survivors have such high levels of cortisol during and immediately after the trauma, the system gets physically injured. Then with low levels of circulating cortisol, it's harder for trauma survivors to calm down once they get upset. Depleted cortisol levels are a physical injury from trauma, not a mental one.

Trauma survivors also sustain an injury to the opiate system. When a person sustains a physical injury, opiate receptors are activated, and the person goes numb, just to survive. The same thing happens during/after a psychic/emotional injury. Trauma survivors blood streams are similar to drug addicts, they have high levels of opiates circulating in their system. Just like cortisol levels, after a while, these opiate receptors are burnt out, another physical injury from trauma. {Personally, I think this phenomenon explains the extreme difficulties we tended to experience during our third year of our child-loss grief...}

It's also normal to think about, and to remember bad things that happen to us. This alone is not the cause or the source of PTSD. Thinking about a trauma doesn't cause PTSD. If that were the case, every American, every human being on earth for that matter, would be suffering from PTSD.
People with
PTSD tend to feel weird, defective, or crazy because they can't stop thinking about/reliving the trauma. Traumatic things happen so fast, they don't have enough time to be encoded into narrative memory, so they present themselves as symptoms of a dis-ease.

Lets take a look at the symptoms of PTSD.

The symptoms of PTSD are far-reaching, intrusive, terrifying and almost impossible for a non-sufferer to comprehend:

*Difficulty falling or staying asleep

*Irritability and angry outbursts

*Difficulty concentrating

*Recurring nightmares

*Hallucinations and flashbacks 'reliving the experience' in waking hours

*Exaggerated startle response (jumping or strongly reacting at the slightest thing)

*Hyper-vigilance (watching for danger)

*Physiological reaction to a reminder of the trauma

(Bessel A. Van Der Kolk, M.D., one of the original doctors who wrote the definition of PTSD)


So, how about you? Does your Child-Loss Grief and its related stress in your life feel disabling to you?

I would love your feedback!

Does it at times feel like you might be having an "Invisible Disability"?

"What Is an Invisible Disability?"


"I write this..." Invisible Disability David Bedworth, May-02-2010

Chapter 4, Traumatic Stress, Bessel van der Kolk

4/15/10 Thursday's Therapy - The Importance of Recognizing the TRAUMA in Our Child-Loss Grief

Barbara Steffens' full article:



Anonymous said...

Our daughter passed on 3/17/06 at the young age of 5. Mira was our only child and although it's been a little over 4 yrs. It still feels like yesterday. My husband and I are strong believers in Christ and take great comfort in knowing Mira is with our God. However, it feels like I have been in a dream since she has passed. Going on with each day, but not really living. Just getting through moment by moment.

Grieving Mother/Therapist, Angie Bennett Prince said...

Dear Anonymous,

I am so so sorry you lost your precious Mira at the tender age of five. And the fact that she was your only child on top of the terrible loss must be incredibly painful. It is so understandable to me and to my husband Tommy that you are so emotionally traumatized from losing your baby girl that it feels like you are just walking around in a dream, "not really living," just going through the motions.

Thank you for sharing your experience with us. I think it is incredibly healing for us child-loss grievers to share our realities with one another. I know for me, it makes my existence feel just a little less "crazy" knowing others are there too!
And I love it that you clarified that you HAVE God, and you have His peace in knowing Mira is with Him, and yet like us, your grief is incredibly powerful if not somewhat debilitating.

Thank you for sharing with us and with our other readers. Please know that our love and prayers go out for you in your very painful loss. I look forward to meeting you and your husband...and your baby girl Mira in much happier times one day in Heaven.

May God bless you and hold you oh so close during your grieving until then,

Angie and Tommy

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