The Death of Common Sense: When Love and Grief Become ‘Disordered’

Joanne Cacciatore, PhD
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There is some hullabaloo going on about “prolonged grief disorder,” AKA “complicated grief disorder.” Yep, another grief-related ‘mental illness.’  According to an NEJM blog the “condition is characterized by intense grief that lasts longer than would be expected according to social norms and that causes impairment in daily functioning.”

Ha! Social norms? Around grief? Talk about pathology! Western culture’s “social norms” and expectations around grief, especially when traumatic, are as abnormal and avoidant as any society could get. The average bereavement leave is three days, many bereaved parents are medicated within days or weeks after a traumatic loss (even in the presence of data to suggest these medications can be harmful and iatrogenic), and mourners are expected, and then pressured, to get back to ‘life-as-usual’ often within weeks or mere months, even after traumatic death. And our social networks often fail as others’ tolerance wanes in the months and years that follow. Here are some words from mourning clients of mine who note they feel: “lonely,” “avoided,” “ostracized,” “grief is trivialized,” “abandoned,” “like no one understands,” “disconnected,” “pushed to heal,” “like no one remembers.” These are pathologies of our culture, not of individuals.

The same blog continues:

“The hallmark of complicated grief is persistent, intense yearning, longing, and sadness; these symptoms are usually accompanied by insistent thoughts or images of the deceased and a sense of disbelief or an inability to accept the painful reality of the person’s death… the urge to hold onto the deceased person by constantly reminiscing or by viewing, touching, or smelling the deceased person’s belongings… often feel shocked, stunned, or emotionally numb, and they may become estranged from others because of the belief that happiness is inextricably tied to the person who died. They may have a diminished sense of self or discomfort with a changed social role and are often confused by their seemingly endless grief”… “for more than six months after the death of a loved one.”

I believe certain groups are at risk of – again – being diagnosed and “treated” for absolutely normal feelings and experiences after an excruciatingly painful and traumatic loss.

For example, I worked with a mother who lost her three children in a fire. Why would she not have persistent and intense yearning? Why would she not long for her children? Feel sadness? Experience an inability to accept their deaths? Why would she not feel shocked … emotionally numb? Why would she not experience a diminished sense of self? And let’s not underestimate the power of being surrounded by cruel and insensitive others while in our grief.

Please consider that when others promote ‘treatment’ for a ‘disorder’ related to grief, they are asserting that these are aberrant – somehow abnormal – reactions. They are medicalizing what it means to be human, to love and to, rightfully, mourn. Um, sorry, no.

When the overwhelming majority of a population feel the same way, experience the same emotions, and contradict what others, on the outside looking in, assert are “normative,” then I’m going to defer to the *real* experts to establish the Gaussian curve for that particular population.

I reject this idea that, somehow, a mother whose three children die in a fire or a mother whose two children are murdered or parents whose baby dies during birth or whose son died at three of cancer or whose daughter is raped and murdered are “disordered” for feeling the aforementioned symptoms. No way will I be convinced of that. Rather, a world wherein those horrific events can occur is deeply flawed and the tendency for our culture to pathologize the pain and suffering they expectedly would endure is a sickness. Of *course* they experience an ‘impairment in daily functioning.’ No shit Sherlock. This is a NORMAL reaction to ABNORMAL tragedies. Come on, let’s use our hearts and our minds about this. Is common sense dead?  Of course grief is complicated. So is love. Heck; life is complicated. But none of the aforementioned are ‘disorders.’

So here’s the question: Do some people need support through traumatic grief? Oh yes, yes, indeed. Many do. And here’s the next question:  Need we medicalize and pathologize traumatic grief in order to provide aid? No, nope, no we don’t. And we shouldn’t. It is trivializing and dismissive and an offense to our humanity.

The best support and care we, as providers and as a community, can offer is nonjudgmental loving, compassionate space to be with what is … others to remember and speak their names … unconditional respect for our emotional state … a place of safety … time to mourn a profoundly important and utterly irreplaceable relationship … time and space and kindness as we integrate the loss … and eventually, support without coercion as we find meaning and purpose in life again if and when we are ever ready.

43 COMMENTS

  1. Although I am not a huge fan of the language of DSM and I worry about the incursion of drug treatments for people who may heal with time and love and support, no treatment is implicit to the label. I wonder how your “working with” is different from other sorts of supports a person might be offered by another mental health professional. Why is “traumatic grief” a less stigmatizing term? Why is what you do not considered offering “treatment” for people in distress? This is not intended as an argument but as a genuine question.

    • Sandra,

      I know, and appreciate, the fact that you are trying to change your perspective. And I know it’s hard to mentally comprehend the magnitude of the fraud you’ve been brainwashed with, I used to believe doctors were trained based upon valid science, too. Truly, I am (not to sound condescending) proud of you for choosing your journey. And I am grateful.

      But it would have been a much “less stigmatizing term” to have my denial / concerns of the sexual abuse of my son (medical evidence was eventually handed over by some decent nurses), and the spiritual abuse of my daughter (she was denied a baptism at 10:03 am central time on 9.11.2001 by the alleged child molester’s pastor best friend) be called “traumatic grief,” rather than “bipolar” and “paranoid schizophrenia” and “depression caused by self,” by three different doctors with different motives.

      Because this resulted in me being defamed to my entire family, by a bunch of doctors, claiming “bipolar” was a supposed “life long, incurable, genetic mental illness.” This harmed my relations with my entire family, until I could medically explain how I’d been made sick by these doctors, and their various motives for doing so. Grief due to trauma is not considered a “life long, incurable, genetic” brain disease, generally, at least not until recently.

      Declaring people’s identity and real problems to be “irrelevant to reality” and a “credible fictional story,” while creating psychosis via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome (“neuroleptics … may result in … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures,)” is inappropriate and unacceptable human behavior, even for doctors.

      Are all the psychiatrists aware of the fact that all people are different, so some people are allergic to your drugs? As a grown adult, I was made psychotic on a child’s dose (.5mg) of Risperdal. Do the psychiatric practitioners even know the antipsychotics are known to cause the schizophrenia symptoms, via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome?

      • Oh, and Joanne, thanks for the blog. I was psychiatrically defamed and drugged for belief in “something from childhood and the church” by a Jew, my belief Jesus loves me, and the Holy Spirit “voice,” and “God” by ELCA Lutherans wanting to cover up the abuse of my children, according to my medical records.

        I completely agree that when love and grief become ‘disordered,’ we’re dealing with the death of common sense. For me, it happened just after 9.11.2001.

      • Academic,

        It was not my intent to attack Sandra, I fully understand she is trying to do the right thing, and I commend her for that. I would just like to point out that too many children and women who are dealing with symptoms or concerns of abuse are being declared “psychotic” (please look into John Read’s research). But symptoms or concerns of abuse are not a brain disease. And the antipsychotics, do in fact, cause the schizophrenia symptoms. I’d really like for the medical community to get out of the business of claiming victims of abuse have “life long, incurable, genetic” brain diseases, then creating the schizophrenia symptoms with the antipsychotics. But I do understand it is easy and profitable to kick someone when they’re down.

      • Academic,

        I will add that you accused me of making an “ad hominem” attack on Sandra, after I’d made it clear I appreciated, and was proud of her no doubt difficult journey, away from mainstream psychiatry.

        As one who claims to be an “Academic,” you should, of course know, “An ad hominem … means responding to arguments by attacking a person’s character, rather than to the content of their arguments.” And I did not attack Sandra’s character, I complimented her on choosing the difficult path she did. So I do not appreciate your inappropriate ad hominem attack of me.

        But I did point out major problems within the psychiatric industry, in general, which I certainly hope, and do not believe, Sandra herself supports, based upon my reading and listening to her journey.

        I believe Sandra does have concerns of the adverse effects of the antipsychotics. And I’m trying to spread the word that the antipsychotics do, in fact, cause the symptoms of schizophrenia, via the central symptoms of neuroleptic induced anticholinergic intoxication syndrome.

        Please don’t inappropriately insult me personally by claiming that I’m attacking individuals via “ad hominem” attacks, when I’m in reality I’m expressing concerns regarding the improprieties of an entire industry.

        • My comment concerned your statement, “And I know it’s hard to mentally comprehend the magnitude of the fraud you’ve been brainwashed with…” This struck me as ad hominem, or at least disrespectful. I will take you at your word that you did not intend it to be so.

          • Academic,

            I’ve actually listened to Sandra talk in real life, when she was learning about Open Dialog. She was refreshingly honest about the fact that approach was very different than how she’d been trained to think and approach clients.

            And I know it was hard for me to “mentally comprehend the magnitude of the fraud [I was] brainwashed with,” too. I used to believe doctors and pastors and bankers were honest, properly trained, and respectable people, our society brainwashes us to place trust these professions. And there is a tremendous amount of theory being propagandized as fact within all the sciences also. And our government is now seemingly controlled by the central banks and corporations our founding fathers warned us about.

            I don’t think it’s just Sandra who needs to “mentally comprehend the magnitude of fraud [we] were brainwashed with,” I think we all need to wake up and smell the coffee. I’m still just on this journey myself, however. It was not an ad hominem attack, and I specifically stated it was not my intent to insult Sandra. Perhaps, you found it disrespectful for one human being to congratulate another human being on choosing to take the road less traveled, and begin the difficult journey?

    • As a former hospital chaplain who also worked in a large retirement center I know that the DSM has absolutely no place pathologizing grief.

      Grieving the loss of loved ones is normal and there’s no time limit about how long it should take. Every person, being a unique individual, grieves differently and in their own time. It may take years for a person to get over such a loss.

      The treatment for grief is listening to people as they talk about the loss of their loved one and how it’s changed their lives. It’s listening, even though you’ve heard it fifty times before this time. It’s listening so well that you can tell the story yourself. It’s listening without judgment and without being uncomfortable. One of the big reasons that people don’t want people to grieve for longer than they feel is acceptable is because watching a person grieve creates lots of issues and discomfort for the person observing. We want people to stop, not for their sake, but for ours. If you can get past your own discomfort and you listen well and deeply without judgment or trying to tell the person what you think they need to do, you just may become a great grief counselor. The treatment for grief is not drugs. The treatment for grief is listening deeply without judgment and being willing to sit supportively with the person who is grieving.

      I think you probably already know this and that I’m preaching to the choir.

    • Working with someone takes the “someone’s” capacity to do so for granted. Even if someone desires to work to improve her mood and circumstances, she may not be capable. Medicine may bring the person back from the edge so that she is able to do the work necessary to get healthier.

      • The so-called “medicine” that you’re referring to works to make people numb to their emotions and feelings. This is the absolute worst thing that you can do to a grieving person for it is only in working through all those horrible feelings of loss that a person finally moves back into life. After experiencing the long and drawn out death of my mother and the murder of my sister a year later, I do not believe that you ever get over the loss of beloved people. The pain changes over time from the horrible and piercing kind to a pain that’s not as sharp, but it’s always there. The hole that’s left in your chest where your heart once was can never be filled. You just learn how to deal with it better than you once did. But if you “medicate” people they never have a chance to move through all of this delicate and yet detailed process of grieving properly.

        I agree with Joanne that people are always capable, especially if they have someone who will sit with them through all of the agony and just listens without trying to tell them what they should do. It’s the people around them who want them to stop the process because it’s uncomfortable for the people watching. When you try to make them stop and move on you’re not doing it for them, you’re doing it for yourself, plain and simple.

      • You don’t make people “better” against their will. You simply don’t. You make yourself feel better at the expense of someone else – that’s what it is.

        You can offer someone help but it’s up to them and them only to take it or leave it. The arrogance and ignorance of psychiatry are astounding.

  2. I already knew about about the end of the exclusion of the mourning period in the DSM5. Is this something different? If so, I find it hard to believe, given the flak psychiatry has already received over this issue. But it seems there is no end to how brazen these people are.

    A shock doctor gets put in charge of a $400 million slush fund, designed to promote brain interventions for “mental illness.” Michelle Obama joins NAMI in calling for more drugs for the “mentally ill.” At times like this, it seems as if we are going backwards in our movement for human rights.

    When I hear about these things, as someone who has been in this movement since 1971, it’s very hard not to give in to despair.

  3. Rhetorical question: and what exactly is the ‘normal,’ non-pathological reaction to tragically losing your children?

    I like how you call it a ‘war on humanity’ because it does, indeed, seem to amount to that. The DSM dehumanizes, pure and simple. I’m certain grief existed way before psychiatry ever came about. How was it handled then?

  4. Joanne
    I contracted my “prolonged grief disorder” when my healthy 3 year old died suddenly of an over-whelming infection one day. She was my only child, and her death, apart from being the most excrutiating painful and debilitating experience of my life, swept away every organising structure – my friends who usually had similar aged children, my job, chosen to suit my role as mother and every future plan that I had in place. Despite this, within days of her death, certainly within a few weeks, pretty much everyone was expecting me to have “moved on” and re-grouped, when in reality, I could barely take a shower and make a ham sandwich.

    I found myself nodding rigorously at your article. It is very much my experience, and I cannot but agree that the issue is a societal pathology, not complicated grief. The Church (where we had been active members) were supportive until she was buried, but the Minister was clear that after that the Church must move on. At the End of Year prize giving 8 weeks after she died, he refused to have her name even mentioned. Friends quickly began to press me to “get back to normal”. Going back to work was a particular bug-bear, as apparently it makes you feel better. I ONLY took 4 months off. I remember one friend who was especially vocal on the issue confided a few months later that she couldn’t bear to go into her child’s empty room when she was staying at her grandparents for a night, as it upset her too much – yet everyone seemed to expect me to assimiliate my child’s absence more easily because she was dead. – as though being dead is somehow easier.

    People kept talking about me accepting her death, but I always felt that it was me who was excrutiatingly aware of her death in every one of my breaths, whilst it was others who wanted to behave as though she hadn’t existed. It was like they were missing out this crucial stage where we sat down and wept together. By the time I fell pregnant with our second child, 6 months after our daughter died, I think most people had moved on completely, as though our daughter’s death, our stint as childless parents and our now little broken family, separated as it was by Heaven and Earth didn’t exist at all. As you can imagine, as I struggled with the pregnancy, I was bombarded with stupid comments about I should “enjoy” my childfree time before the baby (gawp), and after she was born, about how easy it is for me – only having the one.

    People often say “I know I couldn’t say anything that could make it any worse”. The thing is – that’s not true. When you are so vulnerable – and you remain like this for years, not days after the death, it is bloody easy to make things worse. I remember being distraught for 2 or 3 days after a friend, complaining about picking her children up from different parties, remarked that it was easy for me as I didn’t have the stress of children in different places! I was so hurt. Here I was, trying to press on, as everyone had told me I should, and people didn’t even notice our huge loss – even though she knew my eldest daughter and had a child who was born the same year.

    It is a societal pathology – my grief is normal and understandable. The net effect of society’s coldness is to force bereaved parents underground – where they socialise with each other in private spaces, and share together, relieved to be amongst others who “know”.

    Couldn’t agree with your last paragraph more – what a shame that such loving care, in my experience, is rarely apparent.

    • Susan,

      I’m very sorry for your loss. And you are absolutely right, “It is a societal pathology – my grief is normal and understandable.” My sister-in-law lost her first born daughter almost 30 years ago now, she still celebrates her birthday every year. Her family supports her in this remembrance. It is appropriate to remember one’s deceased loved ones, this is why people celebrate All Saints Day, Dia de los Muertos, and the likes. I’m sorry for your loss, and I’m sorry some within our society feel they have a right to defame people for remembering their loved ones.

    • That rings so true. I have thankfully never gone through the loss of a child but having gone through some pretty bad emotional experiences I know how ruthless even your best meaning friends and family may be without a clue that they are saying/doing something wrong. They don’t want to listen at all and avoid you because you make them feel bad or if you force yourself to put on a smile and shut up – they keep babbling about things one would think they would have the sensibility to understand are hurtful. Shall you explode at some point and tell them how insensitive they are – you’re overreacting and crazy. I just hope to myself that I’ll never be so ignorant and hurtful to anyone going through such pain but sadly that’s what you can expect from 99% of people.

  5. As a parent who has lost her only child, my beloved 16 year old daughter, I definitely find that most people want me to get fixed and do it quickly. She died in a car accident on her way home from school. I asked for and received medication. I also know that had I not had that medication, I would not be typing this today. I did receive therapy. This happened two years, ten months and 23 days ago. As time went on, I was able to wean myself off the strong medication and I now take Wellbutrin. Long before my daughter died, I was suffering from major depression. My daughter had Aspergers. I don’t go many places. Don’t do much. And before, we were involved in so much. Alex was actively involved in marching band and we supported that a lot! I have been diagnosed with Complicated Grief and PTSD. Of course my grief is complicated is what I want to scream to the world. My baby is dead! I always tell people that until you lose a child, you will never know how much your life changes. I am not the same person nor do I make an effort to be. I work part time for a church. My husband and I go on vacations. But, I do not care to go out with friends. They have kids, hopes, and dreams. Our hope was in our daughter. Our dreams are shattered. Is grief complicated? Disordered? Maddening? Damn skippy. We have been painting and redecorating our house. Just yesterday, we gave our daughter’s bed to her cousin. Her room is empty now. Alex is gone. She is never coming back. We live in a different world than most people. They try but they will never fully understand. And, we pray they never get the chance to understand.

  6. Why do people automatically start talking about the deceased in past tense? Doesn’t it make sense to use present tense when referring to a loved one who is deceased especially when a death is recent? It seems to me that such a convention would be much kinder to those experiencing grief.

    • I can only speak for myself of course, but no, I don’t think it makes sense to talk about the deceased in the present tense. Although I’m sure the suggestion is well-intentioned, referring to the deceased in present tense feelss like denial to me, and that is neither helpful nor kind. The death of the beloved is horrific, especially the death of a son or daughter. It’s a horrible thing to face, but it must be faced. Denial is a natural reaction of course. It was my initial reaction. (“No! Not my son! You must have him confused with someone else.”) What I needed (and still need) in the aftermath of my son’s death was compassion – shared feeling. I needed people who could face this horror with me courageously, but with a shared broken heart.

  7. Great article and everything you said is 100% correct, people go back to work way to soon following the loss, their colleagues have no idea what to say and most organisations have no support mechanisms in place. Everyone I know who went through a traumatic experience were offered antidepressants, “the quick fix”, when they are in fact very dangerous. I’ve written an article; You are not mentally ill you are grieving, if anyone is interested. https://www.linkedin.com/pulse/you-mentally-ill-grieving-kate-hamilton

  8. I think the challenge may be more basic.

    I have been a Certified Peer Specialist for 8 years and have received extensive training in both anger management and grief counselling. The main reason is that the agencies I worked for at the time had no licensed clinician on their staff that wanted to do either of these.

    Strange that they would think that the most potentially vulnerable of their staff should take this on 😉

    I found I have an affinity for both and my world and my recovery has become so much richer for it.

    I work with a group of truly wonderful caring clinicians now and yet when I came here and they looked at my background you could hear a collective sigh of relief that I could take both of these areas over.

    I work for the VA and vets can be angry and they have experienced traumatic loss at a greater percentage then the population in general, so I am busy. Far too busy.

    When I work with someone learning to live with grief, my first question is “Tell me all about them, every last detail and don’t leave anything out” most of the folks say something like “Really, nobody else wants me talk about…”

    Is it uncomfortable? As first , sure but then you realize you are being entrusted with the magnificent life stories of these people you will never meet. It’s a gift that can only be experienced and never adequately explained.

    So don’t tell me about the DSM, diagnoses, time limits or definitions. This is far too important for that kind marred 😉

  9. Mike, I wish you could be cloned several times over. My god, if all the mental health professionals were like you and Joanne, the psych med pharmaceutical industry would be put out of business.

    Joanne, unfortunately, it seems even when one experiences grief like issues that don’t involve death, many people don’t want to listen and expect you to move on and focus on the positive. I finally had to stop responding to one friend’s email because I feared I was about to say something I might regret.

    Thank you for the great work you are doing.

  10. “condition is characterized by intense grief that lasts longer than would be expected according to social norms and that causes impairment in daily functioning.”

    Despicable. I think only a real psychopath who has never had any real attachment to any other living organism, human or else, could come up with that one. Do we real have to explain why this is sick? What world are we living in?

  11. My job in a flower shop requires me to interact, all day long, with people who are celebrating life events or sympathizing with great loss and sorrow. As a bereaved mother, you can imagine how especially difficult Mother’s Day events are for me to cope with all day. Yesterday, I came home from work to find two pieces of mail; one an invitation to a Parent’s Without Partners group that my daughter (only child) and I belonged to when she was young. We had shared many happy camping trips with these people, but lost touch over the years when she grew up and the group dissolved. Most of them are unaware of her death. The second piece of mail was from the state’s Office Of Victim and Survivor Rights And Services, informing me in a very, business-like manner of the “expected release date” for the man who killed my daughter.

    The combination of the day and those two pieces of mail brought me to my knees in a wave of grief and despair that lasted the rest of the night. Today has been no picnic either, and tonight, I was sitting at my table, wondering if I am going to be able to make it through this… thinking about all those who think it’s time I “moved on” or “got closure” (it’s been 19 months) … and all those “friends” who completely disappeared from my life because they are too uncomfortable or don’t know what to say. Then my computer ‘dinged’ and I saw this article, sent to me by another bereaved mother somewhere across the country. A mother who I’ve never met in person or spoken with outside a few emails. A mother who knows exactly how I feel, and how many other bereaved parents feel and took it upon herself to send me this – at just the right moment.

    The fourth day after my daughter was killed, I went to my Dr. with chest pain; within minutes he sent me home with prescriptions for anxiety and depression. I didn’t need those pills then and I don’t need them now. I needed exactly what Stephen Gilbert said above. And occasionally, on days like yesterday and today, I need to read articles like this and be reassured that I am a normal, grieving mother and there is no time limit on this kind of grief and pain. We live in one of the most screwed up societies on this planet and I can’t help but think all these prescriptions and drugs are, generally speaking, doing us more harm than good. (Yes I’m aware of the exceptions.)