Prolonged Grief Disorder (Pgd)

[melina]

I have been reading about Prolonged Grief Disorder - or PGD - as it's referred to. It's been suggested as a new diagnosis for ICD-11 and DSM-5. Fortunately it's not been included - as far as I know. I think there are far too many diagnoses for normal human conditions as it is.

However, I'm starting wonder about my grief as I approach the three year mark. "Symptoms" of PGD include:

1. Confusion about one's role in life or diminished sense of self ( i.e. feeling that a part of oneself has died)

2. Difficulty accepting the loss

3. Avoidance of reminders of the reality of the loss

4. Inability to trust others since the loss

5. Bitterness or anger related to the loss

6. Difficulty moving on with life (i.e. making new friends, pursuing interests)

7. Numbness (absense of emotion) since the loss

8. Feeling that life is unfulfilling, empty, or meaningless since the loss

9. Feeling stunned, dazed or shocked by the loss

Having 5 or more of these symptoms is required for the diagnosis - and it has to be at least 6 months since the loss. I am experiencing symptoms 1, 3, 4, 5, 6 and 8.

It goes on to say that the symptoms have to affect one's daily life to a large degree:

"The bereaved person who suffers from PGD feels devalued and in constant turmoil, with an inability to adjust to (if not a frank protest against) life without the beloved.

PGD is defined by its symptoms, duration and intensity. The symptoms are present every day, cause significant distress and functional impairment and remain intense, frequent and disabling for six months or more after the death."

I'm functioning normally at work, but my private and social life is certainly suffering. I can't seem to connect with people any longer. Their interests seem alien to me. I don't have the energy to participate socially and when I try, I always feel like an outsider. I just don't belong anywhere. Much of my identity must have been very tied up in my family, and now that my husband is gone and my children have moved away, I only have my work left. And my dog. But it's not enough.

Maybe there is something wrong with me. Maybe my grief is abnormal. I can't seem to find my place in the world.

Melina

[MartyT]

Melina, my dear, I don't think there is anything "wrong" with you, and I don't think your grief is "abnormal." It is what it is, and the harsh truth is that it is up to you to find a way to deal with it. If the way(s) you've chosen so far is/are not working for you, then it's time to try something else.

It seems to me that placing a diagnostic label on what you are experiencing at this point in your grief journey is less important than your courage and honesty in acknowledging it. Recognizing the problem is always the first step in solving it. I also think the fact that you are aware of each of these "symptoms" in yourself is reason enough to seek the support of a professional therapist. As a therapist yourself, I expect that you already know this, and I hope you will give yourself permission to find someone you trust who will work with you to help you to sort through all of this and figure out where you'll go from here. You are so worth it, Melina, and you so deserve it! ♥

[melina]

Marty,

The fact that you suggest I see a professional therapist indicates to me that what I'm going through is not normal.

I already see a grief counselor. I've been seeing her since my husband died. Going to a psychologist seems pointless since I know all my colleagues around here. I'd have to go somewhere far away, and that would require a lot of planning and researching.

All I really wanted was to hear other people's experiences.

Melina

[MartyT]

I'm so sorry, Melina ~ by encouraging you to see a therapist, I certainly did not mean to imply that whatever you're going through is "not normal" ~ On the contrary, I only meant that I think seeking outside help when you're feeling stuck is wise, regardless of the cause.

[MartyT]

This was just shared on LInkedIn by Tom Attig. It reflects my own thinking as well as my own experience with grief, and seems to fit our conversation, Melina ~ most especially the last two paragraphs (reprinted below): When Does A Broken Heart Become a Mental Disorder?

. . . Mourn the death of your loved one in your own way. There is no prescribed formula. You may cry; you may not. Your reactions will be shaped by many things: the relationship you had with the deceased, your personality style, and the support or lack of support you receive from others. Push aside those who tell you to move on, that every cloud has a silver lining. What one person finds comforting might not work for another. Find friends and family who understand, and with whom you can share your experience. If they won’t listen or help, or if their help is not enough, search for support groups through your local hospital, hospice or community organizations. Don’t be afraid to seek professional help, but if you do, ask about the person’s training, qualifications, and experience with grief, loss, and bereavement.

We grieve as deeply as we love. We can get off track with love, and we can respond to our grief in ways that aren’t healthy, or don’t serve us well. But let’s not make love, or grief, a mental disorder.

[melina]

Thank you, Marty.

Melina

[mfh]

This piece is about recovering from disasters..like fires or probably a tornado...but I see no reason why it does not apply to the loss of a spouse, which in my books is a disaster in one's life. We see so much about the first year and even the second and third that I decided to check out year 4. I read it once quickly but plan to read it again. There are sentences in here and concepts that I find very helpful especially "recovery from recovery". Mary

What+to+Expect+in+the+Fourth+Year.pdf

[MartyT]

I don't know where you found it, Mary, but I thank you for sharing this excellent article ~ and I agree with you completely that it certainly does fit the disaster of significant loss!

[LarrysGirl]

I suffer from all of the above and it has greatly affected my daily living, panic attacks, not leaving my home, anger, hopelessness, exhaustion. I see my health being affected this last 2 years, one moment is frightens me and the next moment who cares. Larry's death brought with it a culmination of not only losing him but losing the first time in my life I felt safe, the first time I felt accepted and loved for me. Its a tragedy in so many ways. Deborah

[mfh]

I don't know where you found it, Mary, but I thank you for sharing this excellent article ~ and I agree with you completely that it certainly does fit the disaster of significant loss!

Marty, it certainly describes me to a tea in many places, especially the "recovery from recovery"....as I continue to follow the turns in this gigantic labyrinth of grief. I googled fourth year of grief (or something like that) because I never see information about that and I am still hurting and fairly lost...though calmer on the journey.

[MartyT]

I found it, Mary ~ It's a very important and relevant piece, and I've added a link to it beneath the article I posted on my Grief Healing blog this morning.

I am especially struck by the author's assertion that:

Depleted reserves does not cause normal tiredness that rebounds after a rest, but deep exhaustion that often feels worse after resting for a time and can be pushed aside by being active, although that masks the need for rest. It should be respected if we are not to pay for it later.

A very astute observation, don't you think? ♥

[mfh]

Deborah and Melina, I thought i would share the attached with you as I think it speaks to the feelings we have on this journey...especially the last third of this. As hard as I have worked these three years, I know I have not listened to the voice within me and stopped long enough (a week at a time is not long enough) to deal with what this journey demands of us. I think I have arrived at the place where I am finally ready to surrender. I wrote this today and the last part may speak to some of what you feel. I think, for me, I need to and am ready to finally do what I have known I need to do for a long time...just stop...just be...just accept where I am and see what happens. That is what I am about now...

your workshop.pdf

Metteline, I agree with Marty wholeheartedly, that whatever we do on this journey is pretty much normal...however long it takes. I know that if what I am committed to now...i.e. stopping...is not enough, I WILL contact either the grief counselor I used early on or probably someone else and work with her for a while...so someone can hear me and bounce things back to me. It does not mean I am depressed or have a mental disorder. It means I am doing my journey work.

Deborah, I wonder if you are seeing someone. If not, it might help.

Peace to all of us

Mary

[melina]

Mary,

This is a good article. The only difference here is that these are families or couples rebuilding life together. We're doing it alone. That's what makes it so tough.

Melina

[Wifflesnook]

Mary I read that and it's just like how I feel going into Pete's shed, which I almost never do because its unbearable. The tools that he collected over 50 years, all organised, all his garden tools hanging neatly. Whenever I wanted a job done he just went into his shed and found what he needed and did the job without fuss. Somehow this is one of the hardest places (of many hard places). If I need to find a tool because someone is doing a job for me and say have you got a small screwdriver, I feel a sense of dread, because I have to go into his beloved shed. And for you, since Bill was so creative, this is even harder.

I read Melina's list and after a year I have almost every symptom on the list. But I think this is just how grief is, when we have lost the person who have our lives meaning. I honestly don't think I can heal, or even want to. The loss of Pete is too massive.

[kayc]

Well I relate to #s 1, 6, and 8 and I do not think this is abnormal. And you're right, it is harder to do it alone. I, too, find places I don't want to go (our camper) and don't feel able to deal with or face. If other people are doing better than I am after this length of time, that is great for them, but I don't think we should get caught in the trap of comparisons. All of our losses are real and our grief is relevant and we're doing the best we can to assimilate and adjust. I don't think this was ever meant to be easy or pleasant, no one would ever covet loss/grief. It is what it is, I can only just "be" with it.

[HAP]

Thank you all. I needed this today.

Harry

[mfh]

I found it, Mary ~ It's a very important and relevant piece, and I've added a link to it beneath the article I posted on my Grief Healing blog this morning.

I am especially struck by the author's assertion that:

Depleted reserves does not cause normal tiredness that rebounds after a rest, but deep exhaustion that often feels worse after resting for a time and can be pushed aside by being active, although that masks the need for rest. It should be respected if we are not to pay for it later. A very astute observation, don't you think? ♥

Yes, Marty. That sentence jumped off the page at me because it is exactly how I feel. It confirms that even if I feel a bit of energy for a while, being active is not the way to go because it is masking the exhaustion, deep exhaustion that I live with. It talks about how our energy does not rebound after rest but I also think of the rebound effect (as in nasal sprays etc.) and believe that is at play also...what one thinks helps, i.e. rest just makes the situation worse in a sense or at best, in this situation, does not help. I have been thinking there must something seriously wrong with me that I am still so exhausted after all this time. But my gut said nothing is wrong (outside of what I know i.e. the RA which is minor-low titers) I am just plain exhausted from all that has happened as well as all the running I have done in these 3 years. I am DONE!. This sentence was so consoling. Light bulbs are going on for me in regards to this whole journey and I am so grateful as I see the next step which is to STOP, to allow myself to be where I am and be ok with that. A friend was here for 2+ hours helping me hang pictures and catching up. She has been through cancer and is now figuring out her life also so I shared that piece with her and it touched her also. Recovering from recovering. I wish I had saved you the search as I did have it on my computer but did not click that you would want the source. Sorry. Glad you see the quality and relevance of the piece as I see it. No surprise. Peace, Mary

[mfh]

Mary,

This is a good article. The only difference here is that these are families or couples rebuilding life together. We're doing it alone. That's what makes it so tough.

Melina

Melina, I agree many of these folks do have families or are in a couple but not necessarily true of all disasters. Think ot those who not only lost their home and all possessions but their spouse or spouse and children and are trying to rebuild as a single parent or couple who lost kids or someone who lost spouse and kids. I think the message in this piece is applicable to all of us who have experienced a disaster. There will never be a situation exactly like each of ours. What Bill and I had is different than what anyone else had and vice versa. But this piece is addressing the deep exhaustion which makes rebuilding so difficult. And when I am tired, I get discouraged, get little accomplished, feel like a wimp and tired of telling friends I am tired. But you know, I AM TIRED, and I need to honor that which I have NOT done. You mentioned being tired also...so perhaps that is your starting place. Peace, Mary

[marsha]

Raising my hand here! #1 and #8, with #5 thrown in for good measure. I'll be at 5 years in a month, Melina. At 3 years, I was wiped out, like, stick a fork in me wiped out. I don't feel that way anywhere near as often, although #'s 1,8 and 5 are still sticking around. I find nothing good in labeling yourself with a diagnosis (that I don't agree with, btw). Grief is fluid for me. It ebbs and flows. After accepting that my husband was actually dead, I then had to accept the fact that I was actually still alive. It's ongoing and moves ever so slowly. It's taking years, literally.

[mfh]

Raising my hand here! #1 and #8, with #5 thrown in for good measure. I'll be at 5 years in a month, Melina. At 3 years, I was wiped out, like, stick a fork in me wiped out. I don't feel that way anywhere near as often, although #'s 1,8 and 5 are still sticking around. I find nothing good in labeling yourself with a diagnosis (that I don't agree with, btw). Grief is fluid for me. It ebbs and flows. After accepting that my husband was actually dead, I then had to accept the fact that I was actually still alive. It's ongoing and moves ever so slowly. It's taking years, literally.

Marsha, I am not glad you were exhausted, wiped out at 3 years but it is a relief to know someone else who felt that way. I drag my body around after 3 years. I work for about 2 hours and have to rest...me, who hiked miles at high altitudes not too many years ago. Thanks for your post. I hope 1,8 and 5 disappear for you soon.

[mfh]

I have rested after hanging pictures and sharing with a friend for two plus hours and I have to say that the piece I found today about the fourth year of grief (above) has given me such a sense of peace. It has dovetailed with other posts some here and some made on Facebook by Marty and a couple of others. It has given me permission to be as exhausted as I am; to take the rest I need no matter what others around me think; to understand better the fatigue I experience; to know that if I intend to do two eye surgeries this summer, I had best prepare for those by resting as much as possible; to be where I am with comfort and acceptance; to be grateful that I have the time to heal. I feel as though my chest has opened with the input, my own decisions and actions and renewed and deepened commitment to my healing. As I look at Melina's list of symptoms I also deal with some of those but feel committed to do what I must for me. I am certain today that I have let myself off the hook...the hook called "After 3 years I 'should' feel better at all levels. I have made progress...lots of it but I am not there yet. Not sure when I will be. And that is finally ok. Amen.

[MartyT]

Yes, Mary. Amen ♥

[mfh]

Yes, Mary. Amen ♥

[mfh]

Marty, this is the author of that piece on the 4th year...

http://therapists.psychologytoday.com/rms/name/Robert_M_Gordon_PhD,ABPP_Allentown_Pennsylvania_21935

He is in practice in PA http://www.mmpi-info.com/

I could not find any similar pieces written by him. He has some books on couples...that seems to be his forte.

Mary

[melina]

All I really wanted to know is if others were experiencing similar "symptoms" - so that I could feel I wasn't abnormal. So thank you all for your replies. It helps to know that some of you are going through the same things. I do think that there is a tendency to overdiagnose normal human experiences - labeling reactions to difficult circumstances as disorders.

I think my main problem right now is that I'm very lonely and find it hard to connect with others. It's difficult not having my best friend here any longer. Other friends just don't fill his place. I just went through a 4 day weekend, and it was much harder that I had expected.

Melina