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I have to admit that beyond popping by here from time to time, my reading on grief these days is very limited. Yesterday I came across something that hit home...

Prolonged Grief Disorder

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Grief is a normal response to bereavement. Researchers have found that 10–20% of people experience a prolonged response to bereavement that impacts functioning and has adverse long-term effects on health.

Prolonged grief is considered when an individual's ability to function and level of distress over the loss is extreme and persistent. People with PGD feel "stuck" in their grief, experience a chronic aching and yearning for the dear departed, feel that they are not the same person anymore (e.g., unsure of their identity, loss of a sense of self and self-worth), become emotionally disconnected from others, and lack the desire to "move on" (sometimes feeling that doing so would be betraying the person who is now deceased).[/quote]

https://en.wikipedia.org/wiki/Prolonged_grief_disorder

After reading it, it certainly looks like I fit most, if not all the criteria. Most if not all of us posting here are seemingly part of that 10-20% they mentioned. The article also had me feeling a bit angry. That somehow the 80-90% of people that "move on" (their words not mine) are normal and we suffer from a disorder. Pardon my language but that's a bit of bullshit right there.

Yes, I'm still hurting. Yes, I still feel lost to an extent. Yes, I don't truly know my place in this world. Yes, I'm still suffering. But, it isn't a disorder. It's called losing the one person in your life that meant everything. Losing love. Losing your best friend. Losing your confidant. Losing your way of life. Losing happiness. Losing comfort. The list of losses goes on and on when you lose your soul mate. You don't "get over" something like this in 6 months as the article states. My guess is the authors of that Wikipedia article haven't experienced the kind of loss we have.

Remind me to stop reading Wikipedia articles in general.

Mitch out.

 

 

 

 

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There seems to be an issue with the quote box. Hopefully you can see where the quote ends and my words start. The software won't let me edit it.

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42 minutes ago, mittam99 said:

Remind me to stop reading Wikipedia articles

Mitch, my dear, I don't think that Wikipedia is the best source of information when it comes to grief and mourning. Many of the most respected individuals in the field of thanatology took strong issue with the notion of including Prolonged Grief Disorder in the latest issue of the DSM (Diagnostic and Statistical Manual of Mental Disorders, published by the American Psychiatric Association) and this is why. Most grief counselors and grief therapists detest "medicalizing" grief by putting psych labels onto bereaved individuals. We believe that grief is as individual as a person's fingerprint, and it has no time frame. Think of such labels as a way for practitioners to use a code that is recognized as reimbursable by a client's insurance company. Just another way many of us are forced to conform to the rules in our so-called health care system. 

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I’ve read this in other places too on the net.  Sometimes Google is an enemy.  I know how I feel and for all the reasons you stated, Mitch.  I’ve read stories or seen others who have done 'better' than me adjusting.  I’ve spent lots of time asking my counselors if there is something wrong with me.  I had someone more important to me than myself and that was taken away.  I’ve tried to make it about me now, but it doesn’t work.  I gave myself completely to another.  Some thing I never did before.  Now he is gone and while I am still me, I’m also forever changed losing that intertwined safety and love.  I’ve given up trying to find words to describe it.  there is nothing wrong with me, or if there is, I haven’t found a fix for it in over 4 years.  I thought I might find some answers at Foss, but they didn’t either marry, had conventional marriages or still have thier spouses.  And 6 months?  That’s preposterous.

You’re right, Marty.  Insurance companies want codes for reasons to seek help.  I should ask my counselor today if he thinks this is a term that should be used.   My guess is no.  I don’t know who makes decisions for entries, but the parameters are too small.  

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I'm not real keen on that "PGD" label. I think most of us here were lucky enough to have a spouse that we were crazy about. And of course when we lost our anchor, it couldn't help but affect us the way it has. Grief is not a medical condition. There is no surgical procedure that will remove it. Nor is there a (legal) drug that can be taken 3 times a day until the disorder goes away. We aren't freaks of nature either. We are simply people who have lost our reason for being, and have been devastated by it. 

The fact that we get up each day and find a way to continue putting one foot in front of the other is a tribute to an inner strength that w maybe didn't even realize we had.

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Mitch, I don't see you or myself suffering from PGD...we are functioning.  Our lives may not be what we prefer (we'd PREFER to have them back and things as they were!) but we're doing the best we can with it.  There is no "fixing" this, only learning to live with or deal with it.  There's no set time or ascribed period when we're "over it" because we have to learn to LIVE with it!  How do you "get over" losing your other half?!  And don't even get me started on the "moving on" phrase, that is a phrase for OTHER people to feel better about our grief, it's not reasonable or rational for US!

Even doctors who write these article don't have a (blank) what they're talking about and guess what?!  They still go home to their spouse at the end of the day!  So I don't worry about what others think.  If it feels fluffy for them to think I'm stuck in my grief, let them think what they want, and they can do what they want with it too!  Of COURSE I'm not over George, I never WILL be!  

14 hours ago, olemisfit said:

The fact that we get up each day and find a way to continue putting one foot in front of the other is a tribute to an inner strength that w maybe didn't even realize we had.

You betcha!

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I always say that if Susan had not been so sweet losing her would be easier. Maybe "PGD" means losing a true soulmate, vs a less close relationship.

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It just is sort of ridiculous that we're now being pigeon holed as having a "disorder" because essentially we lost our soul mate. And the criteria being used in almost laughable. To reinforce my original post, please read this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5990943/

This whole concept of 6 months of grieving being the "norm" is frankly insulting to the magnitude of our loss.

"Persisted for an abnormally long period of time (more than 6 months at a minimum): following the loss, clearly exceeding expected social, cultural or religious norms for the individual culture and context."

It truly feels like no one, professionals included, understands what this feels like. Where's the head shake emoji? OK, this one will do. 😠

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Surely it must be taken into account that mental disorders exist and are subject of diagnosy and treatment. I don't know if Grief is one of those, being in the experience doesn't make me an expert, but I take Marty's opinion as one of authority in the matter and I share what she says.

Having said that, it seems that with grief happens the same as with love. When science try to label and conceptualize love, it sounds all wrong.

If there's something wrong with me after 5 years, well I can't take it back and give it back! 

My 2 cents.

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54 minutes ago, mittam99 said:

It just is sort of ridiculous that we're now being pigeon holed as having a "disorder" because essentially we lost our soul mate. And the criteria being used in almost laughable. To reinforce my original post, please read this:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5990943/

This whole concept of 6 months of grieving being the "norm" is frankly insulting to the magnitude of our loss.

"Persisted for an abnormally long period of time (more than 6 months at a minimum): following the loss, clearly exceeding expected social, cultural or religious norms for the individual culture and context."

It truly feels like no one, professionals included, understands what this feels like. Where's the head shake emoji? OK, this one will do. 😠

There is a huge variation of knowledge among the medical profession. The grief experts like Marty and my counselor Susan Powers do not throw around time limits. OTOH I had this conversation with my PCP six months after Susan died. PCP: Still think about her every day? TomPB How about every 5 minutes? PCP: I can give you some psych meds for that. 

Needless to say, I have a new PCP. I think we just have to be aware that the clueless are out there and avod them. They're easy to spot.

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I don’t like that they call it a mental disorder.   We’re talking about the death of a human being that supremely impacted peoples lives.  Yet, I understand the need for codes, tho I don’t get why depression or PTSD isn’t enough.  It’s bad enough being socially relabeled as  widows/widowers or worse yet - single for taxes.  I don’t think it is us, I think it is the relationship.  Some marriages are, for lack of a better word, conventional.  I don’t say this judgementally.  I just know some people that are in them and it’s different than what we had and they are content in it.  I certainly didn’t know til I met Steve.  Had I not, I might still be with my 1st husband and led a life with love, but it wasn’t anything like this. I’m a believer there is someone for everyone, but not everyone meets someone who you become one with.  

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I understand that we had a deeper love and connection than most others. That's a given and why our numbers are small here relative to the overall population. What I don't understand is people essentially saying we are the ones with a problem. That somehow I'm mentally ill because I still feel married and don't want to be with anyone else. I'm still lost and hurting and I don't see that changing. That whole 6 month concept trivializes our grief.

PGD is a farce, IMO. We are just people who lost the most important person in our life. We're just trying to adapt and cope the best we can. That's not a disorder.

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2 hours ago, mittam99 said:

PGD is a farce, IMO. We are just people who lost the most important person in our life. We're just trying to adapt and cope the best we can. That's not a disorder.

As someone who has worked in adult mental health services in one way or another for 20 years (although I do not and will not "diagnose" people), I can confirm that everything has been turned into a pathology or a disorder of some kind.  Nearly every single variation of the human experience is now considered a disorder, or will be medicalized very soon.  The reason?  The almighty dollar, because insurance calls the shots and pathologized people are profitable.  it's disheartening and disgusting.

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Just when you thought it couldn't get any more ridiculous, I found this.

Complicated Grief Disorder Test

Prolonged Grief Disorder... Complicated  Grief Disorder... Makes me wonder if someone is on commission to come up with as many new mental disorders as possible. 🤔

Our grief journeys are long and difficult and painful. They are not "disorders". They are not tags or labels to be glued to our foreheads. We are living a life that was shattered to pieces when we lost our beloved and we are doing our best to find our way in a world without the one person who made life better.

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Personally I think all of our grief is complicated, uniquely and individually, although I realize they affix that label to certain situations. ;)

 

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19 hours ago, Gwenivere said:

I don’t like that they call it a mental disorder.

I don't either but I don't give a rat's fig what they think about me.  ;)

 

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2 hours ago, kayc said:

I don't either but I don't give a rat's fig what they think about me.  ;)

 

Amen, and I am SO uninterested in what people think about me trying to contact Susan on the other side.

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I also could care less in a sense. It's still irksome that someone who hasn't lived my life or doesn't understand the relationship and intense love story I had with Tammy, is telling me that six months is my grieving limit until I'm considered "out of order". 😧 And unfortunately, the average person believes these labels and disorders to be a fact.

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I’ve been fortunate.  Although after all this time it is not a topic to be talked at length with outsiders, i had about 2 years of people 'understaning' the impact.  Now I am on my own.  I told my counselor about the 6 month thing and he said bullcrap to that.  He said he would be concerned if I was wandering around my house in my wedding dress with mangled hair waiting for Steve.  But time restrictions?  Nope, he said that is personal to the person and intensity of the relationship.  He agreed some marriages were of 'convenience', for lack of a better word.  There is love, but not the kind we talk about here.  I know one other widow I run into and while she misses her husband, she had built her own outside life over the decades so she is putting her time there and doing well.  I’ve looked at the couples we know and most fit that.  There seems to be a tighter bond about thier children.  With them gone, in my age group, they’ve settled into more companionship relationship.  One thing I’ll never forget is Steve’s sister dying 4 months after him and my nephew saying she loved her big brother so much she just kinda gave up her medical fight.  She had lost her husband 2 years before Steve.  I’ve never seen a closer brother and sister.  Their other brother never speaks of either of them.  It’s all about his family and they all, from him and his wife down to grandchildren, live in a little compound.  Not very conventional and I’m rarely informed about what is left of the family.  I’m just the woman Steve married.  I so miss his sister and parents as I was family to them.

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As Kieron said, it's the "Almighty Dollar". Another new label to create a malady that can be miraculously cured by yet another new pill. I watch a lot of TV and at least once a day there is another new pill on the market that is unfamiliar, each with side effects far worse than the condition it "cures".

Time has no meaning in grief. After six years, the pain in my heart and the loneliness are still almost unbearable. I don't cry much anymore, but the feeling inside is like a big lump of nothingness. What I wouldn't give to hear that crazy old fool hollering at me from the family room as he watches TV, "Did you see that ?"  I never did learn how to see through these darn walls.  lol

My body and soul are completely wrung out and were it not for all of you here....................................

I love you.

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On 3/20/2019 at 7:08 PM, Kieron said:

As someone who has worked in adult mental health services in one way or another for 20 years (although I do not and will not "diagnose" people), I can confirm that everything has been turned into a pathology or a disorder of some kind.  Nearly every single variation of the human experience is now considered a disorder, or will be medicalized very soon.  The reason?  The almighty dollar, because insurance calls the shots and pathologized people are profitable.  it's disheartening and disgusting.

As a long time AA member I know that alcohol and drug rehabs often need to provide a psych diagnosis to get insurance to pay. Just being an alcoholic or addict is not enough.

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I honestly think by it's very nature, all grief is complicated. After all, we aren't talking about losing one's favorite pair of sneakers. We are talking about the loss of a human being. And in the case of this particular forum of Marty's, we're talking about the loss of a spouse, partner or significant other. And even at the most basic level, losing a life partner or spouse is (by far) the largest of all stressors. On an individual basis, it's clear that the reaction to the loss of a partner/spouse varies widely. It's pretty clear the regular posters here have lost their soul mate. Unlike others (like my brother in law's brother), who was "looking for a young, hot chick" months after he lost his wife of 30+ years to cancer.

What bothers me about these labels of Prolonged Grief Disorder and Complicated Grief Disorder is the idea that we can neatly wrap up grief with a few newfound words. That artificial six month concept of PGD is absolutely ridiculous. But, it's an easy way to to compartmentalize who is grieving "normally" and who isn't. And that's ultimately what this is about. Putting labels on people to conform to what others have decided is right or wrong. Now, you and I know there is no right or wrong in grief. That everyone's circumstances and grief reactions/journeys are different. But to those who haven't experienced it first hand, these new labels create the impression that anyone who hasn't moved on after six months or so is clearly having issue or may even be disturbed.

I was with Tammy for 15 years. To some of you who were together with your mates much longer, that may not seem like a long time. But, in my life, Tammy was everything to me. I didn't meet Tammy til I was 40 years old. I've always given the outward impression as being extroverted but I'm an introvert. Tammy was my first and only true love. For the first half of our time together, Tammy's Lupus was fairly well controlled. We were always on the go, whether it was going shopping, going out to eat or travelling. And then in 2007, I got that fateful call from a co-worker that she had been rushed to the hospital. It was touch and go for months with lung surgery and an extended stay at a rehabilitation center. I took leave from work to spend 24/7 with my Tammy. From that time on , Tammy's health went downhill. Dozens of emergency room situations, many surgeries, life and death infections, heart, liver and kidney issues. She got MRSA and I became her wound care nurse. I was Tammy's husband and her caregiver. Our life revolved around our love and Tammy's failing health.

When Tammy was rushed again to the hospital in January 2015, I had no idea that two months later, she would die. She died 2 days after coming home from the hospitalization and rehab stay. She and I had hope for the future when she came home. But she died. The day she died I prepared a special meal with some of her favorite foods, including corned beef. She never got a chance to eat it. For two years, I couldn't bring myself to eat corned beef even though I loved it. The article on Prolonged Grief Disorder would have me believing I'm mentally ill because I couldn't eat the corned beef. Because it was a reminder of the day Tammy died.

My question is this...

How could my grief not be "prolonged"? It's painfully obvious it's complicated. I don't need a study or some findings that tell me I have some "mental disorders" because of Tammy's death. I will be grieving the loss of Tammy my whole life. I will continue to think about her every day. I will from time to time, think about the day she died and if there was anything I could have done better. I don't look at that as a disorder. It's called losing the love of your life and doing the best you can in the aftermath of a tragedy that affects every moment of your life.

When I was a young boy I'd often complain to my mom about something regarding my sisters. In complaining, I'd say something like "But, you let Joyce do that, why can't I"? And my mom would always say the same thing... "Don't compare". And it was very wise advice. These studies don't seem to understand that you simply cannot compare one person's grief to the next person's grief. Every situation is ultimately unique. I get it. I'm not a "trained professional". But I'll tell you what. I've have four intense years of on the job training and I've learned a lot.

Sorry for the rant.

Mitch

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On 3/22/2019 at 10:50 AM, KarenK said:

What I wouldn't give to hear that crazy old fool hollering at me from the family room as he watches TV, "Did you see that ?"  I never did learn how to see through these darn walls.  lol

My body and soul are completely wrung out and were it not for all of you here....................................

I love you.

That gave me a chuckle!  How we grow to love those idiosyncrasies...and miss them when they're gone.

We love you too, and I'm glad we all have this place to meet.

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I have been to twelve weeks of grief share class at the church. They offer a meal right before the class. It gets me out of the house and I know at least for one night of the week I do not need to worry with preparing my own meal.

Tonight's topic was "Don't let grief define you". There is only one definite thing I now right now. I am not the person I was before I lost my dear wife Rene'e. I can't understand what has happened to me because I have never experienced such pain before. Every day, from the time I wake in the mourning, until I close my eyes at night, I feel the pain of my loss.

I went from the happiest I've ever been in my life to the saddest I've ever been in my life in the space of two months.

For me, as compared to being with the love of my life, where I am now is completely unimaginable.

I would like to think that living with such a loss is what defines me.

How can the deepest love which results in the deepest loss be considered in a negative way?

So what are they trying to say? Be careful not to love too much or you could suffer from mental illness?

I agree, ridiculous.

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